Featured Reports

Taking kindness seriously

For Mental Health Awareness Week (18th-24th May) we thought it would be worth taking a look at this study of patient experience in inpatient mental health care.

It describes itself as "the first study of patient experience in acute adult mental health settings" and as such, it sets a very high bar for potential followers. At 111 pages, it is not a short read - and with its appendices, it weighs in at an intimidating 337 pages. But there is little in here that could be described as waffle, and a great deal that offers valuable insight.

It outlines the importance of visible changes in response to feedback: "When change was not observed, it disincentivised patients and carers from giving feedback and staff from collecting it, as they felt that there was nothing they could do about actioning it".

It explores links between staff experience and patient experience: "When staff were over stretched, demoralised... and frustrated at the lack of change that resulted from patient experience feedback, they stopped attempting to collect the feedback".

It looks at intrinsic versus extrinsic motivations for staff to engage with patient experience work, stating that if quality improvement is "driven by external drivers, such as the CQC, complaints and serious incidents, staff disengage from collecting feedback and develop a siege mentality motivated by fear".

The often confusing context for patient experience work is also considered: "NHS trusts are required to collect experience data from patients. Currently, there is little understanding of what data are most important, what processes are in place to collect them and whether such data make any difference to the quality of patient experience".

In fact the report covers so much ground that it is impossible, in this short summary, to do it justice. If you are short of time, it is worth at the very least looking at the discussion, integrated findings and conclusions in Chapter 9. And pages 85 - 88 offer a set of "rules" on how to collect, analyse and use patient experience data to improve the quality of care. (It actually says "...to improve the quality of care in adult inpatient mental health settings", but many of the rules could apply to almost any healthcare setting.)

The theme of this year's Mental Health Awareness Week is "kindness". One way to show kindness towards people suffering with their mental health is to take their lived experience seriously. This important study points to ways to do that.

Experts of experience

Many readers will be familiar with the term "experts by experience". This is the idea that in a science-driven healthcare culture, we need to make room for the kind of expertise that comes from living with illness, alongside the expertise that comes from studying or treating it.

Equally familiar is the idea that experience of illness is personal. Two people might have the same long term health condition, but their lifestyle and treatment choices might be very different, and so might their ability to get the services they need. It is these personal differences, often affected by class, gender, ethnicity and so on, that can lead to questions of how "representative" experts by experience can be.

This wide-ranging paper considers whose lived experience is represented in healthcare, as well as how and by whom. It recognises that simply sharing an experience does not mean it will be considered evidence, or that the person sharing it will be deemed an expert. It goes on to ask how "experience" is converted into credible "evidence", and how specific pieces of evidence can then become an accepted part of a healthcare system's body of knowledge.

The paper identifies three factors that shape the likelihood of an experience being used to generate evidence and create knowledge. Firstly, whether the experience has been sanctioned by being shared through an official feedback channel. Secondly, whether the experience has been solicited by a healthcare professional. Thirdly, whether the experience has been sought with the specific intention of being used for a particular purpose. These, it says, serve as preconditions for an experiential account to be used as evidence in the NHS feedback landscape.

The process of converting experience into evidence and then into knowledge is, to a large extent, steered by NHS staff who gather patient feedback. They have the power to "shape what and whose experiences are incorporated, used and responded to and in what ways... Their work involves filtering, aggregating, collating and isolating patient experience as it comes in through the various sources".

These staff "develop expertise in... extracting and sharing... experiences within the specific institutional contexts of the NHS and the demands for evidence-based policy and practice". They are not so much experts by experience, as experts of experience.

The paper concludes that incorporating people's experience into healthcare remains challenging. "Patient stories" can be powerful because of their subjective and emotive nature. But that also makes it hard for them to be accepted as reliable evidence, and patients often lack the resources needed to produce the kind of evidence deemed necessary by decision makers. The answer could be to recognise that as well as experts-by-experience, we need experts-of-experience.

Beyond lived experience

Patient and public involvement (PPI) in healthcare is a well-established principle. In spite of that, practice remains variable. There are arguments over definitions, tensions over power dynamics, and questions of equality and inclusion.

One of the challenges, according to this paper, is "legitimacy". For example, "Some professionals do not believe in the value of experiential knowledge, or consider it legitimate only when public contributors are... connected to their particular patient group". This, say the authors, places public contributors in a "legitimacy double bind". Contributors who are supposed to speak for a group can be denigrated as "unrepresentative", while the evidence of those who tell only their own stories can be dismissed as "anecdotal".

The problem can be exacerbated when PPI is equated solely with lived experience. That is because "To be involved at the higher levels public contributors need to take on more strategic roles in determining healthcare agendas and directions". However, "In strategic roles, direct lived experience inevitably becomes less and less relevant to the work at hand".

In this context, the study sought to uncover how public contributors themselves define their legitimacy. It reports that "The most striking results related to the number of valuable roles the public contributors established for themselves, and the way these provided the internal legitimacy left lacking by government and funder mandates".

The legitimacy of these roles is based in a number of factors, of which "lived experience" is just one. Others were "knowledge and skills", "citizenship" (particularly in service of a greater public good) and the "outsider" status of public contributors.

The paper concludes that "The conflation of PPI with lived experience [presents] a challenge for public contributors and involving organisations alike". Instead, a broader view of legitimacy could "demonstrate the potential value of public involvement in settings where lived experience appears to lack relevance". The authors suggest that "all involving organisations could benefit from encouraging public contributors to undertake a wide range of roles".

Patient data sharing - who wins?

The launch of the coronavirus contact tracing app on the Isle of Wight has - once again - ignited debate over the pro's and cons of sharing personal health data. While advocates of track and trace say that digital solutions are essential, privacy and human rights advocates are not so sure.

Against this background, a briefing paper from the House of Commons Library makes for useful reading. It offers a comprehensive but concise summary of all the main points of the data-sharing debate, including legalities, practicalities and ethics.

It includes some lessons from (recent) history - not all of which inspire confidence in the state's ability to safeguard personal health data. These include the following:
- The suspension of the national Care.data programme, due to concerns over the opt-out system in place and over patient confidentiality. Following the review, the then Life Sciences Minister confirmed that Care.data was to be closed.
- A finding by the Information Commissioner that the Royal Free Trust failed to comply with the Data Protection Act when it provided patient data to Google DeepMind.
- An NHS investigation which found that none of the 80 NHS Trusts affected by the 2017 WannaCry ransomware attack had applied an advised Microsoft patch update.

The report looks forward as well as back - examining cross-border data sharing after Brexit. We learn that in any US-UK trade talks, one negotiating objective of the United States would be to "Establish state-of-the-art rules to ensure that the UK does not impose measures that restrict cross-border data flows".

In response, the UK Minister for Trade has said that "We would seek to review any rules in place to safeguard data... and ensure that they are not overly protectionist. We set up the pipework, but whether or not the taps are turned on is a matter for the regulators". Patients may or may not be reassured by this.

As always, we need to remember that personal data is the personal property of patients. It is shared with clinicians on the long-standing principle of confidentiality. Any wider sharing - with government departments, with foreign governments or with private enterprise - must be on the basis of democratic debate and informed consent. In the rush to react to coronavirus, the patient and public voice must not be steamrollered.

Lived experience under lockdown

"Aside from the tragic loss of life", says this report, "we know that coronavirus, and measures to reduce its spread, is impacting on the health and wellbeing of millions of people in the UK, and changing the way they access care and support".

It seems that some people are nervous about accessing healthcare settings where the risk of infection with coronavirus is higher. Others feel that their problems are not important enough to merit treatment when there are other, more urgent, priorities for the NHS.

The study aimed to explore the knock-on effects of coronavirus for health and wellbeing in the UK by understanding the experiences of people whose care has been disrupted. It is based on interviews with 12 people in the week beginning 20th April, just after the second 3-week lockdown period was announced in the UK.

It found that in choosing not to seek care, responsibility often trumps fear: "...the primary reason for delaying care was to avoid adding to the burden on the NHS". But the sense of responsibility was accompanied by anxiety. "Some participants were afraid that by following guidance to self-isolate and avoid risk, they would be discharged from services, or 'sent to the back of the queue'."

Fear did also play a part. "One pregnant participant told us that part of her concern about asking for medical help was fear for her baby." Others "reported that they knew someone who had contracted the virus while in hospital for another condition, a powerful anecdote".

People whose care was cancelled or postponed could be left feeling in limbo: "the feeling of having built up to a potential resolution and having it snatched away was a source of disappointment, and where no timetable was available for it to be rescheduled, hopelessness".

An important learning point for health professionals is that in helping people deal with uncertainty, clear personal communication is crucial. "People appreciated being informed at each step of the process, having the time to ask questions and where staff acknowledged the unique situation we are all in."

The report also considers the practicalities of things like hospital visits, telecare, and the use of apps. For the latter, "telephone calls were strongly preferred, because they allow for questions, which is both practically and emotionally valued".

The report, which finishes with a series of recommendations, is a useful addition to the literature on patient experience - and one that might remain relevant for some while yet.

Engagement under Covid

Every year, NHS England runs Experience of Care week to highlight the importance of patient experience, and to give people the opportunity to share ideas, case studies and best practice tips.

This year is no exception, and right now (28th April - 2nd May) is the opportunity to join in. But does it make sense to run Experience of Care week when the coronavirus has put a stop to almost all forms of "business as usual"? The answer, we think, is "yes".

It would be too easy, at a time of national emergency, to assume that patient experience doesn't matter - that we are all too busy with more important things, and that saving lives is the priority. But the emergency brings new challenges to all aspects of care, and for some of them, public engagement is an essential part of working out how to respond. For example:

- We need to find new ways to connect people with relatives in hospital, and to help bereaved families cope with the deaths of people they weren't able to be with.
- We need to work out how to enable visiting in care homes - and look for new ways to bring residents and relatives together.
- We need to understand how people with long term conditions are dealing with "self-management", at a time when appointments and medicines might be harder to come by, and anxiety and loneliness more pronounced.

Our featured report this week (from Australia) explains why public engagement in a time of crisis still matters. It offers handy tips on how to find "consumers" quickly, and tackles some of the practicalities of engaging with people while minimising face-to-face contact. A section at the end explodes some myths - for example, the idea that public engagement is too time-consuming and difficult at present.

The report does not ignore the challenges. However, it finishes with the observation that "Your consumer partnerships do not need to be perfect; the most important thing is that you try."

Moving engagement online

With the lockdown set to continue for a while yet, videoconferencing is starting to become part of the new normal. So can patient engagement work - via committees, focus groups and so on, simply move into cyberspace and carry on? The answer, according to this report, is "yes but..."

"Yes" because the technology these days is sufficiently mature, and many people nowadays are familiar with the basics of social media and with platforms like Skype and FaceTime.

The "but", however, arises from the fact that hosting a business meeting online is somewhat different from chatting with friends or family after work.

A key difference is that business use can make far better use of the wide range of features that videoconference platforms offer. "Don't assume that online meetings are the 'poor relation' of face-to-face meetings" says the guidance. "Online platforms allow for lots of different kinds of interaction, including the chance to use break out rooms, run polls, allow people to share their screens with each other, and to use 'chat' to comment and share responses." Hosts who are familiar with these tools have a much better chance of offering enjoyable and effective online engagement.

Planning and preparation are important too. The guide suggests opening meetings well in advance of the official start time to allow time for people to log in, and then sort out any problems they may be having with sound and vision.

If you want to share your screen, show powerpoint slides, move people to break out rooms, etc, it might be worth having someone to help. "Trying to facilitate, present and manage the technicalities is really hard -- so splitting the roles - with a 'presenter / facilitator' and 'technical support / producer' working hand in hand really helps."

The guide offers further tips - for example playing music as people wait for the meeting to get underway, not stressing too much about bad hair days, and having a back-up plan for that crucial moment when the screen freezes or the video clip fails to load.

Patients at the heart of healthcare

Amid rising death rates and the opening of the Nightingale hospitals, it has been wonderful to see people finding new ways to offer person-centred care. Staff in full protective equipment have been sticking photos of themselves to their gowns, so that patients can see the person behind the mask. Other staff are using knitted hearts to connect bereaved relatives with patients who have died alone.

In the meantime, the day to day work of the NHS goes on, and in all sorts of settings, person-centred care matters as much as ever.

In the latest edition of our quarterly magazine, we hear from Michelle Sokol, who makes the important point that "care" does not only happen in clinical settings. She looks at how regulators can also take a person-centred approach. "Fitness to practise" involves judgements about whether clinicians are meeting the required professional standards. But, says, Michelle, those judgements must take into account the views of patients, relatives and carers.

Brooke Batchelor draws on her experience as a paediatric nurse to think about how we look after children. Sometimes clinicians and parents -- with the best intentions -- hurry or even force children through procedures that are distressing for them. Brooke suggests other, less traumatic ways to gain the child's co-operation and stop them from spiralling into a fight or flight response.

Karl Roberts challenges another assumption -- that care is a one-way process -- provided by health services for patients. In his article, he looks at peer support, and how patients' own knowledge and skills can be a source of all-round learning on how to develop person-centred care.

Regular readers will know that for us, the best learning comes from matching personal insight and experience with rigorous research. So this edition also includes a round-up of the latest studies on patient experience and involvement - many of which offer good news in these difficult times.

Growing public satisfaction

Asking about public satisfaction with the NHS may seem unnecessary at a time when people routinely emerge from their homes to applaud the efforts of healthcare staff. But this survey, carried out before we had even heard of coronavirus, asks questions that are important for society and healthcare in the long term.

As an annual "gold standard" research exercise, the survey provides a rich time trend, adding a depth and context to the findings that, say the authors, no other measure of NHS satisfaction provides.

An encouraging headline is that after falling for the last two years, public satisfaction with the NHS rose significantly in 2019. Overall satisfaction was 60% -- a 7 percentage point increase from the previous year. And while 42% of respondents thought that the general standard of care would get worse over the next five years, that was actually an improvement on the 51% who, in the 2018 survey, expected care to get worse.

The top reasons for satisfaction with the NHS were quality of care, followed by the fact that the NHS is free at the point of use, and that it has a good range of services. The main reasons for dissatisfaction were staff shortages, waiting times for GP and hospital appointments, and a view that the government doesn't spend enough money on the NHS.

On the question of funding, recent government announcements of a new, and more generous five year cash settlement for the NHS could be key in explaining the upturn in satisfaction. It is possible, say the authors, that the public have understood (and believed) that NHS funding is increasing and that this in turn has fed through to an increased optimism about the future of the service.

It is important to note that the survey is about social care as well as the NHS. The satisfaction rating for social care remains "stubbornly low", at 29% - some way below any of the NHS services. Moreover, users of social care were more dissatisfied than users of any other service, with almost one in two (47%) saying they were dissatisfied. The report states that "governments have promised to 'fix' social care, but so far these have remained only promises, and there has been no actual reform of an increasingly challenged sector".

Time for telehealth?

Covid-19 presents us with the need to look after very large numbers of ill people, most of whom must avoid face to face contact with health professionals.

While the lockdown continues, equally large numbers continue to need appointments for minor ailments and long term conditions. They, too, should follow NHS advice: "If you need medical help for any reason, do not go to places like a GP surgery, pharmacy or hospital".

So is it time for a large scale switch to telehealth?

The potential of telehealth has been discussed for a very long time: well over a decade ago, the King's Fund was asking people to think about it. More recently, the Now Healthcare Group has looked at how telehealth "can have a significant positive impact on GP pressure, medicine adherence and medicine wastage". According to them:
- Use of telehealth consultations obviated the need for an NHS GP appointment in 56% of cases
- Pre-triage through app technology could redirect up to 73% of patients to non-GP consultations (i.e. nurse or pharmacist), reducing pressure on primary care doctors.
- When patients were given direct control over repeat prescription ordering they only ordered 31% of total possible items, demonstrating the scope for the technology to reduce over-ordering waste.

Some objections to telehealth have been based on the idea that some of the people most in need of healthcare do not have access to IT or do not know how to use it. But consider this recent research by the Office for National Statistics:
- Virtually all adults aged 16 to 44 years in the UK were recent internet users (99%) in 2019.
- 95% of adults aged 16 to 74 years in the UK in 2018 were recent internet users, the third-highest in the EU.
- In 2019, the number of disabled adults who were recent internet users reached over 10 million for the first time, 78% of disabled adults.

That still leaves some for whom telehealth won't work. But for many - providers as well as patients - the barriers might not be as big as they have seemed. We'll leave the final word to a patient who, just this week, posted this comment on Care Opinion:

"Just had a video consultation on my iPhone with my own doctor and all I can say is that it was excellent. He sent me the link, which I downloaded, followed the instructions which were easy and success! The doctor was there!"

What now for patient experience?

The coronavirus pandemic has, according to some observers, led to a corresponding "infodemic" - a tsunami of facts, figures and advice, not all of which are consistent. We are not going to add to that.

Instead, we want to look beyond coronavirus, and to explore what it might mean for the future of patient experience work.

One thing is sure: in the current emergency, questions about "satisfaction with services" are likely to be seen as an unnecessary luxury. When the wards are full and people are dying, nobody is going to care whether you would recommend the service to friends and family. So the idea that "patient experience" equates to "customer satisfaction" may be about to hit a brick wall.

There is, however, another side to patient experience.

Looking beyond coronavirus, the chances are that we will continue to live in an ageing society, with continuing growth in long term health conditions. So we need to improve our understanding of what it is like to live with illness. Clinicians can't help us with that - only patients and carers can.

Returning to the short-term: part of our learning about the pandemic must be learning about the experience of self isolation and self medication. As hospitals develop treatments, and researchers race to find a vaccine, what are the rest of us learning about coping in our homes and communities?

We need to understand this because people's reactions to, and behaviour during, this crisis will affect disease progression far more than policy statements or clinical guidelines.

Perhaps, in a few months' time, the crisis will blow over and we can all go back to business as usual. Alternatively, we could take this moment to rethink what patient experience work is really about.

Is it time to ditch the "customer satisfaction" model? Time to give up on the Friends and Family Test? To move on from the large scale patient surveys whose results appear many months after the questionnaires have been completed?

Should we instead shift the focus to learning about people's ability to understand illness, manage self-medication, and cope with the social determinants that can make or break quality of life and even survival?

These are big questions and right now - at the start of the crisis - the answers may not be clear. But given that crisis is always a time of opportunity, it might be worth starting now to ask some big questions about the future of patient experience work.

Hearing Survivors of Surgical Mesh

This report from New Zealand opens with the observation that "The use of surgical mesh, especially in urology, gynaecology and obstetrics surgical procedures has been a matter of local and international concern for some years".

Part of the response in New Zealand was to establish a restorative justice approach to address the needs of those affected by mesh harm. The approach would enable storytelling, provide validation and help to rebuild trust.

Restorative justice is described as a process in which "those with a personal stake in a harmful episode come together... to speak truthfully about what happened and its impact on their lives... and to resolve together how best to promote repair and bring about positive changes for all involved".

Patient stories were gathered via Listening Circles, individual meetings and an online story database. From this, says the report, "a complex and nuanced picture of the harms and needs created by surgical mesh has emerged". Participants described
life-changing physical and psychosocial harms, including:
- Loss of trust in healthcare providers
- Injuries and needs rarely being acknowledged or validated, leaving some feeling desperate or contemplating suicide
- Erosion of dignity and grief over losses to physical wellbeing, relationships, identity, employment and financial status.

Mesh injury has also "rippled out through the lives of... families and loved ones. It has deeply affected the emotional wellbeing of partners, children, relatives and communities".

The report makes it clear that the listening process is not an end in itself. A section on "proposed actions" sets out a series of important next steps. Central to that is including "the mesh community and clinicians in transparent and inclusive dialogue in order to rebuild trust and secure lasting change".

As UK health services revisit their own approaches to patient safety and "just culture" it may be worth reflecting on how safety investigations are conducted. For the survivors and bereaved relatives from Morecambe Bay, Gosport, Shrewsbury & Telford and elsewhere, there may be healing to be found in the kinds of restorative justice approaches described in this report.

Anonymity and power

This paper says that online feedback is "an equalising mechanism, enabling people to give feedback at a time of their own choosing, in their own words, often unmoderated and often anonymous".

But is anonymous feedback a good thing? Patients may want it because they "fear that being identifiable may compromise the care they receive if they make critical remarks". Healthcare professionals, on the other hand can "see patient anonymity as... a risk to the reputation of individual practitioners or organisations, given that anyone can say anything, no matter how unfair or damaging".

This, say the authors, "constitutes an 'anonymity paradox', whereby patients see anonymity as a prerequisite but professionals see it as a barrier".

This study explored anonymous online feedback via a series of interviews with NHS staff registered as "responders" for comments received via the Care Opinion platform.

It found that in general, staff understood why anonymity might be important for patients. At the same time, "anonymous feedback creates an unfamiliar and uncomfortable situation. [Staff] are encouraged to name themselves and engage in tailored, personalised conversation, but with a faceless, nameless other". It found that "In spite of themselves, [staff] may try to work out who someone is".

Sometimes, "the perceived unequal relationship and feeling of vulnerability can spark more problematic responses and feelings". The study reports that "Staff may...feel helpless, frustrated, unfairly attacked, and that their professionalism has been impugned with 'no redress'".

Importantly, "Feedback on Care Opinion needs to be seen within the wider landscape of staff response to feedback of any kind, whether anonymous or not". The paper refers to other research showing that medical staff are "strongly supportive in principle of incorporating patient feedback into quality improvement work. Yet they also expressed a simultaneous view questioning the credibility of survey findings and patients' motivations and competence in providing feedback".

Other research, on complaints (from known individuals) reveals similar defensiveness: "staff often characterised complainants as 'inexpert, distressed or advantage-seeking', described their motives for complaining 'in ways that marginalised the content of their concerns', and rarely used complaints for improving care".

The paper concludes that the 'anonymity paradox' "is at its heart a question of unequal power, risk and vulnerability" It suggests that "Staff used to engaging directly with patients and families... need support in dealing with anonymous feedback, and the uncomfortable situation of unequal power it may create".

Safety in mental health services

"Mental health services... often need to improve the safety of care", says this recent study.

It reports that "In the UK in 2017, the CQC considered over a third of mental health services deficient in terms of safety. Of particular concern were sexual safety and the use of restrictive practices such as restraint and seclusion". In spite of this, "Service user and carer perceptions of the safety of mental health services have not been widely reported".

The study, based on interviews with mental health service users and carers, found differences in the ways that safety was perceived. Carers were primarily concerned with physical safety, to prevent self-harm and suicide. Service users recognised physical safety issues, but also talked about psychological safety, and experiences within services that had led to fear and distress.

One such example is physical restraint, which might prevent self-harm but can also cause further psychological harm. "The trauma of experiencing restrictive practices was graphically described by participants."

In such circumstances, it can be hard for patients to raise concerns or complaints. One interviewee remarked that "If you are ill enough to be detained, you do not have the mental energy to start formulating complaints and pursuing a complaints procedure".

Communications in general were problematic, with carers expressing "frustration at not being listened to, especially about potential early warning signs that were likely to be antecedents to incidents".

Psychological harm can also come from a sense of being locked out of services.
"Accessing help in a crisis had been universally inadequate, distressing and occasionally life-threatening for all participants."

Inadequate access can relate to practical difficulties: "one example... is crisis services with limited opening hours". But there may also be a kind of double standard operating: "Evidence suggests more assertive patients gain access to services in primary care, but in mental health services, assertiveness can hinder access to services with participants being seen as difficult".

All of this has particular relevance for an NHS whose Long Term Plan is steering it in the direction of personalised care. Choice is fundamental to personalisation, and "In other care settings, patients have the right to choose between care providers and can avoid certain individuals or services. For mental health service users however, this autonomy often cannot be exercised due to lack of treatment providers and threat of compulsory treatment". This, say the authors of this paper, makes it "even more important that if autonomy is overridden, safety should be assured".

What matters in A&E

"Good patient experience is an essential indicator of high-quality health care and should be central to national performance measures." So says Healthwatch England in its opener to this report on patient experience in A&E.

However, "while the current four-hour A&E target does help illustrate performance across the NHS... the lack of detail means it tells us far less about the quality of care people receive and their overall experiences".

The report comes in the context of the Clinical Review of Standards (CRS) which is looking at updating and supplementing NHS performance targets. Part of the aim is to ensure that NHS standards "drive improvement in patient experience".

But Healthwatch England makes the point that "time alone does not dictate how people feel about their experience of A&E". Other factors that shape patient experience are:
- Quality of clinical care
- Quality and frequency of communication
- Staff attitude
- Whether the A&E is working well with others services such as NHS 111 and GPs
- The quality of the A&E facilities themselves

"This doesn't mean that waiting times are unimportant", says the report. It acknowledges that "national performance against the current target is a serious concern" that has "left the public lacking confidence in the NHS".

However, the challenge is to "do things differently, not just count things differently". And "if the CRS realigns targets around patient priorities [it] has a real opportunity to improve experiences for people in A&E".

Racism in medicine

Our featured report each week is usually just that: one report, journal article or academic paper tackling one aspect of patient experience. But this week we have chosen to highlight a whole series of articles in a special edition of the BMJ.

The "Racism in Medicine" issue looks at the experiences of NHS staff, exploring inequalities in training and professional development, recruitment, and so on. But, commendably, the issue also covers aspects of patient experience and looks at how some health inequalities are embedded in institutional culture and practice.

One article discusses "Bibi-itis" - defined as "the belief that older Asian women express psychological distress through physical symptoms". This, says the author, is a form of "casual clinical stereotyping that can cause unrecognised bias leading to missed diagnoses, delayed treatment, and preventable unwanted outcomes".

Another, on ethnic disparities in maternal care refers to research showing that
between 2014 and 2016 the rate of maternal death in pregnancy was 8 in 100,000 white women, compared with 15 in 100,000 Asian women and 40 in 100,000 black women. It quotes Christine Ekechi, a consultant obstetrician and gynaecologist, who says "People think of racism in an overt, aggressive way. But that's not always what it is. It's about biased assumptions--and we doctors have the same biases as anyone else."

Neglect of older ethnic minority people in UK research and policy is the subject of a third article. This explains how ethnic health inequalities are undermonitored and poorly understood because of a lack of data and research. It says that "Policy efforts to reduce inequalities, improve population health, and plan for the provision of health and social care are therefore not adequately informed by evidence".

There are other articles, too, that are worth a read - and in an NHS whose Long Term Plan talks of wanting to "to develop and embed cultures of compassion", they should be read. As Zosia Kmietowicz, the BMJ's news editor puts it, "we can all play a part in reducing the disparities and inequalities faced by patients and doctors".

As always, a persistent theme is active obstruction of patients and relatives who tried to raise concerns.

The report of the Paterson Inquiry says that patients were "let down when they complained to regulators and believed themselves frequently treated with disdain". It describes a "capacity for wilful blindness" among "managers and those charged with governance", and says that the inquiry's findings are "primarily about poor behaviour and a culture of avoidance and denial".

The answer to that question probably lies in the active obstruction of patients and relatives who try to raise concerns. But it could also come from the ways in which inquiries themselves frame their findings and recommendations.

This week's featured report looks at the 'implementability' of recommendations from the three inquiries of Ely, Bristol and Mid Staffordshire. Its premise is that "If one of the key reasons for an inquiry is to learn lessons and prevent similar events from reoccurring, recommendations must be implementable".

In order to avoid the Groundhog Day of repeated inquires and repeated failure to learn, every recommendation must comply with two basic requirements. First, it must be clear who the recommendations are aimed at, "for example 'the Care Quality Commission (CQC) should...' rather than... 'consideration should be given to...'".

Secondly, actions must be described by reference to a clearly identified policy tool or operational mechanism. Typically, these would be "incentives, authority and persuasion; the economic, legal and communications families".

This may seem obvious. But analysis of inquiry reports shows that "The vaguest recommendations involve either a lack of clarity regarding who they are aimed at, or are seemingly aimed at everyone. For example, Francis' first two recommendations that 'require every single person serving patients to contribute to a safer, committed and compassionate and caring service' may be seen as 'everybody's concern but no one's responsibility'".

Vague recommendations such as these can be described as "sermons" - moral arguments that are not linked to "carrot and stick" policy tools and are not ascribed to anyone in particular. Worryingly, the analysis shows that "sermons are the main policy tool, accounting for some 89 per cent of Ely recommendations, compared to 66 per cent at Bristol and 63 per cent at Mid Staffordshire".

The paper concludes that "Given the large number of potentially responsible agencies, [inquiry] recommendations should be 'active' with a clearly identified agent and a clear policy tool or mechanism should be identified rather than a vague tendency to sermonise".

Person centred care needs person centred feedback

One year ago, the NHS Long Term Plan was published. It is wide ranging, but a theme that runs all the way through is "personalisation."

It says that one of the "five major, practical, changes to the NHS service model" is that "People will get more control over their own health, and more personalised care when they need it."

That is a worthy ambition, but how will we know if personalised care actually works? The obvious answer is, "ask the patients."

Patient feedback is collected to drive quality improvement, manage risk, and gather insights that clinicians and healthcare managers might miss. Could it also be used to test whether efforts to personalise care are working?

This new report from the National Institute for Health Research (NIHR) does not address this question directly - but it does hint at some challenges.

The first of these, ironically, is that conventional feedback mechanisms are not personalised. The report describes "procedure-driven, standardised approaches such as surveys and checklists [that] are too narrow". In an echo of the Long Term Plan's call for personalisation, it says that "patient experience feedback is about being heard as a unique individual and not just as part of a group. This requires their experience to be considered as a whole, rather than reduced to a series of categories".

Underpinning personalisation is the concept of "choice." But a second challenge is that patients cannot always choose how and when to offer feedback. "In general, only sanctioned channels get monitored and responded to with feedback from other channels ignored."

Personalisation also depends on dialogue. So a third challenge is a failure to close feedback loops, which leaves some patients feeling treated impersonally: "The lack of organisational response to their survey feedback meant they perceived it as a 'tick box exercise' and they thought that their comments would not be used."

So how could patient feedback mechanisms move closer to the Long Term Plan's goal of personalisation? The answer could lie in a recent blog which calls for greater use of "thick data" to support "human-centred policy".

Thick data is the kind that provides insights at an individual or group level, as opposed to "big data" which offers cumulative evidence at a macro, often systemic level. The blog argues for the blending of big data and thick data - and perhaps this should be the direction of travel for patient feedback.

Conventional surveys and "sanctioned channels" have their uses. But an NHS aiming for personalised care has to understand personal patient experience. And that might mean rethinking how it goes about getting feedback.

Credit where it's due

It said that "The nature and scale of the response to climate change will be the determining factor in shaping the health of nations for centuries to come". However, "A lack of progress... threatens both human lives and the viability of the national health systems they depend on, with the potential to disrupt core public health infrastructure and overwhelm health services".

The report went on to say that "Ensuring a widespread understanding of climate change as a central public health issue will be crucial".

We took that as a cue to see what public engagement was going on around health services in respect of climate change. Our findings were disappointing: we reviewed four major national strategies on healthcare and found that none contained any serious reference to climate change, much less to engaging NHS staff, along with patients and public, in debate and action.

Just three months later, something has changed. It is encouraging - and impressive - to see the launch of a Greener NHS campaign to tackle the climate 'health emergency'. An expert panel is being set up, but the campaign is calling on individuals and organisations to start work immediately on actions to cut carbon emissions and other environmental harms.

There is recognition that this will require leadership from the top: a linked website says that "Engagement and sustainability both need to be owned by boards and staff. Engagement and sustainable development programmes must also draw in service users, communities and the wider public, local councils, third sector and Health and Wellbeing Boards".

We will offer credit where it is due. Last October we were disappointed that health strategies appeared lacking on the crucial issues of climate, health, and public engagement. Now, right at the start of 2020, we take fresh heart from what looks like a surge of energy from NHS England. We'll be supporting this initiative - will you be joining in too?

Fresh eyes on end of life care

"Caring for people who are dying is an everyday occurrence in acute hospitals" says this report from Hospice UK. "With around 46% of all deaths in England occurring in hospital, it is important that hospitals provide good quality, compassionate care."

The report describes a way of exploring the patient, family and carers' experiences by walking through a potential journey - from the hospital car park, through the Emergency Department (ED), an acute assessment ward, a general ward, mortuary and bereavement services.

The Fresh Eyes team members consider their first impressions of the ward or service from the perspective of a service user, recording how it appears, looks, sounds and smells. They talk and listen to staff - trying to understand usual practice (for example how a deceased person travels from the ward to the mortuary). They also wander through public areas such as restaurant facilities, chapels, faith and spiritual spaces using available signage to self-navigate.

The method includes both objective and subjective perspectives, with feedback indicating where there were differences in views. Differences of opinion can be helpful in indicating areas which may need further attention.

Photographs are taken to help reveal unloved, often simple to fix areas -- for example, dirty windows, clutter, out of date/unconsidered notice boards and poor signage. Generally, staff knew the issues, and the visit helped to raise the profile for necessary change. Many hospital trusts said it was relatively easy to fund improvements to mortuary visiting areas and bereavement suites through charitable sources.

This is an excellent report - clearly written and with plentiful photos to illustrate the kinds of "unloved" areas that busy staff perhaps stop noticing, but which might add to the distress of people at a sensitive and vulnerable time. A concluding "key actions" section offers helpful tips for improvement.

Hearing is the start of healing

The winter edition of our quarterly magazine looks at patient stories, which are in big demand these days.

Board meetings of healthcare organisations often feature a patient -- filmed, or in real life -- recounting their experience of care. Annual reports carry mini case studies from (mostly grateful) patients. Proposals for service change are illuminated by testimony from patients who look forward to forthcoming improvements.

Of course, negative stories are also heard. They are channelled into complaints procedures or, better still, dealt with swiftly and compassionately by staff who know that a quick response is better for both patient and provider.

But what happens to the stories that don't fit the neat binary of satisfaction/complaint? How do we talk about the messy realities of living through illness, or travelling across "care pathways", or entering the strange world of "patient engagement"?

In this edition, we hear three such stories. Sue Robins wanted to write her way through her experience of cancer. But she discovered that her account did not fit the healthcare system's preferred narrative of illness, cure, and gratitude to healers. For her, uncomfortable stories need to be heard -- without interruption, correction, or looking on the bright side. Hearing is the start of healing.

Tony Roberts looks at the story of "DNAs" -- the shorthand for patients who "did not attend" their appointments. Healthcare professionals can see a DNA as a failure of motivation on the part of the patient. It can be frustrating and dispiriting. Patients, on the other hand, can see DNAs as a failure of motivation on the part of healthcare providers -- to schedule appointments more sensitively, to consider transport needs, to understand the struggle to adhere to institutional routines. They too experience frustration and disappointment.

Finally, Douglas Findlay tells his story of patient leadership. His experience has been interesting, stimulating and challenging. But he wonders whether it really counts as leadership. He sets out some thoughts on how healthcare organisations could rethink their approach.

The magazine also contains our top picks from recent literature on patient experience and involvement.

Status Quo Bingo

As 2019 draws to a close, and all you patient experience mavens head off for your Christmas parties, we thought we'd offer up a bit of festive fun from the Canadian comrades.

This comes from Christine Maika (@maikachristine) who had the great idea of asking the Twitterverse to come up with the kinds of reasons people give for not involving patients and public in discussions about healthcare. She compiled the best responses in a bingo card full of the cliches and timeworn excuses that will be familiar to involvement advocates everywhere.

You can play the "status quo bingo" by just drawing on your own memories of the things you might have heard people say. Or print the card out, and carry it with you to meetings and conferences in 2020. You'll have hours of merriment and laughter!

As Christine says, "Working in different ways means challenging the status quo. Calling BINGO on reasons not to engage people with lived experience will raise important questions, assumptions and might just lead you down a road to transformative change".

Thank you for reading this newsletter through 2019, and accompanying us on our mission to embed patient feedback in evidence-based practice. We'll be back with more news, views and top picks from the literature in 2020. Until then, Happy Christmas!

Emotional labour in patient experience

"Connecting with patient experience is a crucial aspect of... quality improvement interventions", according to this newly published study. "However", it says, "there may be unintended consequences for health care service staff, particularly in sensitive areas of service delivery such as end of life care".

The study looked at the technique of "patient shadowing", intended to help practitioners see healthcare services from the perspective of patients and their families. The process enables them not only to see the problems with their service, but also to empathise from the perspective of the patient. Shadowing has been described as creating "a sense of empathy and urgency among caregivers by highlighting and clarifying the patient and family experience in a way that cannot be understood unless one 'walks in their footsteps'".

The researchers evaluated an improvement programme that included elements of patient shadowing and found that "the emotional power of shadowing was cited by staff... as initiating many transformative effects". However, they also found other consequences.

One of these was anxiety - particularly in respect of "putting colleagues under scrutiny". This was compounded if staff were being asked to do shadowing by more senior members of a team. Another was "resistance". For example, some staff expressed concern that patients may not feel comfortable with being observed, even though the assumption was largely unfounded.

The researchers observe that "Shadowing cannot be considered as a tool that is socially, politically or culturally neutral". Indeed, "Many varied social, cultural and political attitudes to shadowing were found among services: some staff felt surveyed or scrutinised by being shadowed by colleagues, whilst others reacted to shadowing as if it were thrust upon them".

The paper concludes that "Even though it is an intended consequence of shadowing to instil an emotional response... there was also potential for [shadowing] activities to intensify the strain upon staff, particularly those at lower levels of care service hierarchies". "This", say the authors, "emphasises the importance of organisational support for staff wellbeing when carrying out service improvements in this way".

What do patient surveys mean?

Shrewsbury and Telford, Morecambe Bay and Cwm Taf offer ample evidence of the need to pay attention to patient experience in maternity care. In every case, women and birth partners raised concerns, only to be met with institutional defensiveness and denial. The result was serious harm and avoidable death.

Efforts to understand experience of maternity care can help to underpin evidence-based practice. This can improve risk management and contribute to quality improvement. But what do we actually mean by "women's experiences of maternity care"? This paper says that the concept is ambiguous and ill-defined.

Many healthcare systems use large-scale surveys to explore patient experience - but there is no universally accepted definition of what is meant by "women's experiences of maternity care". So what is actually being explored via patient surveys?

Sometimes the basic concept is interpreted as meaning "women's satisfaction with their maternity care". But, say the authors, measurement of "satisfaction" has limited usefulness for understanding and improving the quality of care. That is because surveys tend to extract high reported levels of contentment. This may be in part because of an "acquiescence bias" that may mask critical issues.

As satisfaction with care has generally been reported as high (regardless of the actual quality of care that was being provided), focus has shifted from the measurement of "women's satisfaction with their maternity care" to "women's experiences of their maternity care". However, the study finds that clear conceptual boundaries between these concepts do not exist. Consequently, it concludes, the concept of "women's experiences of their maternity care" is philosophically immature.

The study raises important and intellectually challenging questions for patient experience staff. If we have no clear definition of "women's experiences of maternity care", what are patient surveys actually studying, and why? And once they are complete, what do the survey results actually tell us?

Shrewsbury and Telford is not an outlier

Last week saw the leaking of a report into the deaths of mothers and babies at the Shrewsbury and Telford Hospital NHS Trust. The media response picked out revelations of a "toxic culture" that appears to have been at the heart of the disaster.

The culture included dismissive attitudes towards patients and bereaved relatives who raised concerns. There was, apparently, "A long-term lack of transparency, honesty and communication with families".

But denial and defensiveness in the face of patient concerns is not unique to Shrewsbury and Telford.

The Kirkup review of maternity deaths at Morecambe Bay said, "The treatment of complainants [included] defensive 'closed' responses, delayed replies, and provision of information that complainants did not find to be accurate".

Another review, into maternity care at Cwm Taf, found that "Women repeatedly stated they were not listened to and their concerns were not taken seriously or valued".

And even in Trusts where there have not been official inquiries, there are cultural barriers to hearing the patient voice.

Commenting on the slow uptake of
Learning from Deaths guidance,
the CQC's Chief Inspector of Hospitals said recently, "we are still seeing the same issues persist in some NHS trusts... Issues such as fear of engaging with bereaved families, lack of staff training, and concerns about repercussions on professional careers, suggest that problems with the culture of organisations may be holding people back from making the progress needed".

Evidence repeatedly shows that a poor culture of responsiveness to patients who have been harmed is not unique to one or two "bad apples". It is widespread.

We need to recognise that the culture of any one healthcare provider does not arise in isolation. It is part of, and to some extent derives from, an overarching NHS culture. And the national culture also has a tendency to be dismissive of patient feedback. Evidence of this includes the following:

- We tolerate the use of dismissive language. Patient feedback is routinely referred to as "anecdotal evidence".
- We are comfortable with a double standard in use of evidence. Medical evidence is cherished, preserved and used. Patient experience evidence is treated as disposable.
- We are content to weaken the independent patient voice. Healthwatch, set up as a strengthened successor to the Local Involvement Networks, has seen its funding reduced by over a third.

We can tackle all of this. The term "anecdotal evidence" must be challenged wherever it is used. Directors of Nursing could lead on this. Patient experience evidence should be embedded in professional training, clinical guidelines and practice protocols - just as medical evidence is. NHS England has the Patient Experience Library at its disposal - it just needs to start using it. Healthwatch funding should be restored to its original 2013 level. That is a job for the Secretary of State.

None of this would be hard to do. But it all needs explicit commitment from people in leadership positions

A fuller version of this article, published by the BMJ, is available via the BMJ website

The measurement maze

Measuring patient experience is never easy. Perhaps that is why there are so many approaches - including the Friends and Family Test, CQC and NHS England patient surveys, complaints processes, local Healthwatch reports, and more. But does the plethora of measurement systems create more confusion than clarity?

This report from the Health Foundation looks at quality measurement - including patient experience - across breast cancer care, children and young people's mental health (CYPMH) care and renal care. Its findings will resonate strongly with anyone who has to deal with the morass of patient experience data.

Interestingly, its findings on the often contentious Friends and Family Test are broadly positive. "While many interviewees acknowledged that it is a fairly limited tool, it was still seen as a valuable resource, without which there would be a considerable gap in measuring patient experience. Positive patient feedback, from the Friends and Family Test and other patient experience indicators, was thought to have significant value in terms of improving staff morale."

Other comments, however, reflect concerns about the value of data collection and use. A key question is what is being collected and why: "All the [data] we collect feels like a huge task and nothing happens to it... we're told we have to collect it, but [we're] not aware that it goes anywhere else."

Getting the data back in useable form is also problematic. The authors observe that where interviewees had experience of data feedback, many felt it was not quick enough: "it is painfully slow, which makes it irrelevant".

Even where the indicator data are released in a timely and comparable form, the interviews suggested that the potential usefulness for trusts, wards or teams was limited by the data being hard to locate online, with multiple spreadsheets to choose from and large Excel workbooks to download and navigate.

So how can we find a clearer path through the measurement maze? One suggestion is about analytical tools. "Any approach to enabling greater use of data for local improvement will need to consider the lack of analytical capacity within NHS organisations. [There are] gaps in training and development within analytical teams and in the infrastructure... to use and disseminate the results of analysis."

Another suggestion is more radical, involving a national overhaul of measurement systems. "Given the high volume of national indicators across multiple sources, and multiple national bodies sponsoring and using the data, there is a case for... streamlining and simplifying. It is currently not clear whether [anyone] maintains an overview of all the indicators in use across the system."

Encouragingly, interviewees across all five case study sites expressed a desire for more emphasis on, and greater measurement of, patients' experience of health care services. For some, this would mean questioning whether what is measured also reflects what is important to patients.

How helpful are involvement strategies?

Why do organisations publish patient and public involvement (PPI) strategies?

Presumably it is to help readers understand how and why the organisation carries out its involvement work. But, say the authors of this paper, PPI strategies can also have symbolic importance.

For example, "The presence of a PPI strategic document on a website or the production of this evidence on request is interpreted as a signal that efforts are being made". On the other hand, "The absence of documentation can be negatively interpreted... as a lack of intent".

So are PPI strategies just for show, or do they have practical value?

The authors used the National Involvement Standards (4Pi) framework to assess the extent to which various PPI strategies demonstrated principles, purpose, presence, process and impact. They found that not one met the full range of standards.

Further findings were that:
- Readers were required to work hard to disentangle the 'why' (strategic aim) and 'how' (plan of action) of involvement. There were limited, absent, and confusing aims that were rarely, if ever, logically linked to the proposed process of involvement.
- Documents differed in accessibility of language and content. Some were closer to Plain English and clearly explained NHS or organisational structures, but managerial and technical language with jargon and acronyms dominated the sample.
- Very few documents stated any meaningful detail about who was to be involved, for example by offering data about the local community or demographic information about the patient population across services. This, according to the authors, is especially concerning when considering issues of inclusivity, equity and equality.

The paper aims to "open the debate about the limitations of PPI strategic documents". It suggests an alternative approach - based on continually testing and learning from practice. Through small tests of change or Plan-Do-Study-Act (PDSA) cycles, professionals, patients and public can learn together about what works, how and why. The authors state that this "has the potential to release practitioners from the tokenistic cycle of monitoring and reporting... replacing it with a richer understanding".

When PPI goes wrong

Patient and public involvement in healthcare is generally seen as A Good Thing. But what happens when PPI takes off in directions that neither health professionals nor some patient advocates might have expected?

This paper looks at the use of social media by groups seeking to promote an anti-vaccination message. Their tactics, according to the authors, include misinformation and anti-science sentiment. And these can be hard to counter because vaccination narratives can be complex, and the science may not be 100% clear cut.

Calm and rational dialogue is further compromised by notions of a "war" between people labelled on one hand as "anti-vaxxers" and on the other as uncaring professionals who are "in it for the money". Study participants described being "bombarded" on social media, and treading through a "minefield". They recounted crude language, vitriol and personal attacks.

So how do organisations promoting vaccine use deal with this particular type of patient and public involvement?

Using facts and evidence was important - even in the context of "anti-science sentiment". However, complex evidence needed to be explained in straightforward language.

Emotions matter too - so facts needed to be humanised with stories about the actual effects of preventable disease on real people.

It was important to create safe online spaces for information and debate - for example by quickly removing aggressive comments, and reporting offensive posts.

Responses had to be concise and respectful - and selective too, to avoid amplifying misinformation, or giving false legitimacy to some anti-vaccine views.

Alongside all of this, say the authors, is a need to publicly strengthen the pro-vaccination voice. Partnerships with other organisations played an important role in sharing and amplifying the collective voice. But the belief that vaccine-promoting organisations as a group were failing to adequately engage in the social media landscape was a source of frustration for some participants.

This is an insightful paper - focussed on the anti-vaccine issue, but potentially useful to guide online responses to other contested areas in healthcare.

Over the rainbow

Take up of the Rainbow Badge across the NHS demonstrates the scale of health service support for LGBT patients and staff.

An important principle underpinning the Rainbow Badge initiative is that wearing the badge is not, on its own, enough. Participating providers are expected to develop practical measures for a better and more inclusive experience for their LGBT employees and patients.

We recently pointed to evidence of the need for this, and now a House of Commons committee has weighed in with further evidence.

The report on Health and Social Care and LGBT Communities says that "Good quality medical care is the foundation of our health and social care service", and that "Treatment that is respectful and inclusive is a cornerstone of these services".

However, LGBT people are often less healthy than the wider population, and tend to receive lower levels of care than non-LGBT people. Worryingly, the committee found that "Too often medical professionals focus on sexual health rather than broader health needs and differences when supporting LGBT people".

The report states that "too few health and social care providers are actively thinking about LGBT people when they plan their services". Furthermore, "senior leaders are not doing enough to ensure that LGBT-inclusion is hardwired into commissioning strategies. This problem filters all the way down to training, where medics of the future are not taught how to provide LGBT-inclusive treatment".

The committee concludes that "training currently sends the message that sexual orientation and gender identity are not relevant to providing 'person-centred care'".

Encouragingly, the committee heard many examples of good practice - and while these are not as widespread as they should be, they are seen by the committee as "a clarion call to the health and social care sectors to take up the work that some very dedicated and inventive individuals have already begun".

Cost effective feedback

At a time when budgets are tight, and the NHS workforce is stretched, it is worth asking why time and money are spent on patient surveys, Friends and Family Test and all the rest.

Some providers might cite quality improvement as a motive. Others might talk about person-centred care. Still others might refer to patient safety. All of these would be good reasons for trying to understand patient experience. Especially so in mental health services, since Care Quality Commission patient surveys repeatedly show that people with mental health conditions generally have poorer patient experience.

Our featured report this week looks at how patient feedback is gathered and used in NHS mental health services. Worryingly, in the context of pressures on finances and staffing, it found that half of Trusts collecting patient experience data were not actually using it. A quarter of Trusts struggled to collect it at all, and only one quarter used patient feedback to support change.

There is of course an ethical dimension to this: why ask patients for feedback if it is not going to be used? But the study also raises questions of cost-effectiveness. The authors make the point that "For patient experience processes to be cost-effective for NHS providers, they need to find ways of collecting and analysing patient experience feedback and then using it to drive change".

Increased patient experience activity in mental health services can, they say, lead to reduced rates of violent incidents, faster discharge and improved staff morale. All of these could be seen in terms of cost-effectiveness. But to achieve outcomes like these, "it is necessary to act on feedback in ways that facilitate meaningful change".

The authors of the study are now looking to work with NHS providers to implement recommendations from their report and evaluate the organisational and clinical cost-effectiveness of collecting, analysing and using patient experience feedback to improve service quality.

Burnout and bias

"Despite efforts on multiple fronts, substantial morbidity and mortality differences persist between white and black patients, regardless of their socioeconomic status and level of education."

This opener to our Featured Report for this week touches on the important topic of health inequality. The NHS Long Term Plan is peppered with references to health inequality, many of which focus on public health issues such as smoking, obesity and air pollution.

This American study, however, tackles a different aspect of health inequality, by looking at black patients' experience of racial bias in healthcare. Specifically, the paper asks whether resident physicians showing signs of burnout are more likely to display racial bias in their encounters with patients.

Burnout is described as "emotional exhaustion, depersonalization, and a decreased sense of efficacy". It is, according to the authors, common among resident physicians, and largely driven by work-related factors. These include work intensity, suboptimal supervisor behaviour, lack of flexibility and control, educational debt, and work-home conflict.

The study found that staff with symptoms of burnout did indeed display higher levels of racial bias towards patients. To understand the effect of this, it refers to previous studies, which have shown that "physicians with higher implicit bias toward black people demonstrate fewer patient-centered behaviors during clinical interactions with black patients; in turn, their black patients have greater distrust, have lower level of adherence to treatment recommendations, and are less likely to follow up".

In the NHS, it is well known that staff experience is closely linked with patient experience. So with an NHS workforce under pressure, the implications of this study are serious. Not just for the care and safety of individual patients, but also for more strategic efforts to reduce health inequalities.

As the report says, "given the high prevalence of burnout and the negative implications of bias for medical care, symptoms of burnout may be factors in racial disparities in health care".

A climate for change

What is the biggest challenge facing UK health and social care? Ageing population? Funding? Workforce?

According to the Lancet there is a much bigger challenge: climate change.

It says that "The nature and scale of the response to climate change will be the determining factor in shaping the health of nations for centuries to come". However, "A lack of progress... threatens both human lives and the viability of the national health systems they depend on, with the potential to disrupt core public health infrastructure and overwhelm health services".

It goes on to say that, "Ensuring a widespread understanding of climate change as a central public health issue will be crucial".

We took this as a cue to see what public engagement is going on around health services in respect of climate change. Here's what we found:

This is surprising, because we know that some providers are working hard on environmental responsibility. There is a good summary here on how hospitals can cut greenhouse gas emissions, and an argument here for how the NHS can behave as an environmental anchor.

So - in a week that sees the start of the international climate rebellion,
should healthcare services start thinking more about how they engage with the general public on these matters? The Lancet (as per the quote above) seems to think so. And so do we. And given that "the response to climate change will be the determining factor in shaping the health of nations for centuries to come", we hope to see NHS England and Public Health England encouraging much greater efforts to engage with patients and public on the climate emergency.

Human experience matters most

"You can argue with figures and statistics, but you can't argue with personal experience".

These are wise words from a person who knows that in an NHS driven by targets and performance measures, it is still the human experience that matters most.

They come from Stephen Elsmere, who has used the NHS both as a mental health patient and as a general patient. He is also a carer. And on top of all that, he is an Experience of Care Partner with the NHS Leadership Academy. This is someone who knows what he's talking about.

Stephen is one of a number of patients who are helping the NHS Leadership Academy to think about "patient leadership". You can read their stories in the latest edition of Patient Experience magazine, and can click through to a series of short videos where they outline their experiences and motivations.

We also hear from Jennifer Johannesen, who was the main carer for her son Owen throughout his childhood, up to his early death. Her book No Ordinary Boy is a record of her "encounters with healthcare", and how those are uniquely experienced by a family like hers. Her account also shows that although measures matter, the true nature of "patient experience" can only really be found through personal testimony.

Our third contributor is Liz Pryor, whose mother Anne Robson died in distressing circumstances in hospital. Liz converted her grief to action, setting up the Butterfly Volunteers, who offer companionship to hospital patients in the last days and hours of their life, particularly for patients who have no other visitors. It is an astonishing story of the power of personal experience to effect change.

All this, plus our usual round-up of the latest and best in patient experience evidence can be found in the autumn edition of our magazine. Enjoy!

From setbacks to success

For some time now, health and social care services have been looking for "New Care Models" - propelled by the Five Year Forward View, Long Term Plan, Sustainability and Transformation Partnerships and the rest.

Patient and public involvement has played a big part, with views being sought through the usual mechanisms of public engagement and formal consultation. Often the discussions focus on what works best for patients, and how services can be made better for more people.

This American study works from the other end. The authors realised that a focus on success can sometimes mean missing an important part of the story: what innovators learn when things don't work out as planned. As they see it, healthcare leaders need to understand that setbacks and failures are inherent to innovation. Rather than being feared by people designing new care models, they should be seen as an opportunity to learn.

One example was a programme to reduce avoidable hospitalisations among older adults. This sent advanced practice nurses into hospitals and patients' homes during transitions - such as after a major illness or surgery - to help coordinate care and offer services. But the model only worked for some patients, not all.

Discussions with patients and families found that having the same nurse practitioner visit patients in the hospital and their homes was pivotal because it engendered trust and led to clearer communication about their goals. What had appeared to be a design flaw in the care model was actually an issue about personal relationships.

The paper gives other examples, but makes the point that learning from failure is not always easy. According to one contributor, "One of the challenges of deliberately looking for blind spots is that many health care organizations haven't developed the discipline for doing so". Crucially, "You need to have a culture where people aren't going to be slammed for failing".

People are key - as shown by the comment that "The models are one-third of the story. The people who operate within the models are two-thirds". This can require fresh thinking because some healthcare providers tended to focus narrowly on medical risk when introducing new care models. But once they began to consider social as well as medical risk, they began to gain greater traction. For example, one organisation partnered with a food bank to prepare nutritious meals for heart failure patients who lacked social support.

Ultimately, developing new care models means that "You have to experiment with innovative approaches and recognize instances when what you're doing now just won't get you where you will need to be in the future". And judging what works is not just a matter for clinicians. "We also need to consider what's important to patients - how do they define success and failure?"

Why patients miss appointments

Non-attendance for appointments increases the cost of delivering care, reduces available appointments and increases waiting times for other patients.

It also has consequences for the person who has missed their appointment. According to the authors of this paper on non-attendance by diabetes patients, "People with diabetes who do not attend clinic appointments tend to have poorer glycaemic control, more complications, more frequent hospital admissions and increased all-cause mortality".

So why do patients miss appointments?

The study involved people with diabetes who had previously failed to attend clinic appointments. It found three main causes of missed appointments:
Practical barriers. These can include work and family commitments, and difficulties in travelling to appointments, particularly via public transport. Participants suggested that a wider range of appointment times and having fewer, longer appointments that addressed various aspects of their care would make it easier for them to attend.
Value of appointments. Participants mentioned aspects of appointments that put them off attending. Some were fearful of hearing bad news. Others felt reprimanded if they had not maintained "self-management" regimes. Others felt that they were not listened to.
Perceived impact of diabetes. The majority of participants felt that their diabetes had very little effect on their day to day lives. Some showed very little understanding of their condition, and one could not say which type of diabetes she had.

The authors suggest that their findings highlight the importance of psychological variables in predicting non-attendance at diabetes appointments. They state that "whilst interventions to improve attendance should address practical barriers...there may also be a need to take account of the underlying perceptions about diabetes, the emotional impact and perceived lack of value in attending appointments".

At a time when NHS strategies are focused more and more on "self-management" of long term conditions, these findings could have implications across a range of conditions and services.

Patient Experience in England

Thousands of reports are published every year on patient experience in the NHS, by government bodies, patient voice organisations, health charities and academic institutions.

Our annual Patient Experience in England report cuts through the bewildering mountain of evidence, summarising a year's worth of patient experience surveys, and drawing out key themes from wider research.

The "state of patient experience" overview this year shows that:

- Some patients are more equal than others. The NHS offers universal health coverage but some groups do not get the access they need.
- Online patient feedback can build community - if healthcare professionals respond appropriately.
- Patient and public involvement in research is good in parts. There is not yet a consensus about the need for, and benefits of, involvement.
- Public funding for patient voice is declining, and drug companies are moving in to fill the gap.

The report also looks at "learning from deaths", and finds that culture is impeding progress. And it covers the deepening crisis in social care.

"Improving patient experience is a key aim for the NHS" says Professor Debra Jackson in her foreword to the report. "In my nursing career, I have seen how the unique patient perspective can reveal things that we can miss in the rush and busyness of providing care. The Patient Experience Library represents a realistic strategy to help health service staff gain insights into patient experiences and concerns."

Emergency admissions from care homes

It is well-known that one of the pressures on hospitals is delayed discharge - often linked to lack of capacity in care services. However, the care system can also cause pressure at the front end, by referring people into hospital unnecessarily. And A&E departments can take the brunt of this.

This Health Foundation briefing starts by observing that emergency admissions from care homes can expose residents to stress, loss of independence and risk of infection. It says that care home residents often prefer to be treated in the care home - so reducing emergency admissions could be good for residents, as well as help reduce pressure on the NHS.

The numbers are large - in 2016/17, over a quarter of a million care home residents in England attended A&E. But 41% of emergency admissions from care homes were for conditions that were potentially manageable outside a hospital setting, or that could have been caused by poor care or neglect.

The authors were surprised to find that emergency admissions were particularly high from residential care homes as against nursing care homes. Given that residential care homes provide 24- hour personal care, they say, one might expect residential care home residents to be less seriously ill than nursing home residents.

The study looked at four initiatives to improve health and care in care homes that were associated with the NHS's New Care Models programme. It found reductions in at least some measures of emergency hospital use for residents who received enhanced support. This, it says, shows that there is potential to reduce demand for emergency care from care homes, but it also points to implementation challenges.

Co-production between health care professionals and care homes is key to tackling these challenges - but so is access to linked administrative datasets that can provide evidence to support policy making. It is important, say the authors, that these sorts of data are routinely and consistently collected and are easily accessible if we are to understand residents' health care needs and improve care for this vulnerable group.

Patient centred safety

The newly published NHS Patient Safety Strategy has been described by the NHS Confederation as a "paradigm shift" in the way the NHS treats patient safety. A key feature is a move away from a culture of blame to one of learning.

This paper from Ninewells hospital in Dundee shows what a safety learning culture looks like in practice. Better still, it explores - and resolves - a safety issue by using patient experience as a key learning tool.

The hospital's Radiology Department, in common with units across the UK, uses Magnetic Resonance Imaging (MRI) for diagnostic tests. MRI scanners are generally safe - but they generate magnetic forces that can be up to 30,000 times the strength of the Earth's magnetic field. These forces can cause overheating and malfunction in implants such as pacemakers and artificial valves.

Safety is addressed via a system which requires referrers (GPs, hospital doctors and others such as physiotherapists) to ask patients to list any implants or foreign bodies they have. A secondary check by radiography staff immediately prior to the scan provides a safety back-up. But, say the authors, "Despite constant efforts, there have been recurrent incidences of safety breaches with patients attending MRI department with implants, including pacemakers, when none have been declared".

Rather than ask referrers what was going wrong, the radiographers went to the patients. A questionnaire survey asked patients what safety checks they had undergone at the time of referral. It found that almost regardless of the type of referrer (GP etc) only 50-55% had been asked about pacemakers, and fewer than 50% had been asked about valves, clips and other metal objects in the body.

In case patients had misunderstood or forgotten their conversations with referrers, a second survey was carried out, using face to face interviews to check and clarify patients' responses. It found similar results.

Rather than blame the referrers for compromising patient safety, the radiographers developed a "strategy for change", with risk alerts, and reworking of questions on the referral form. In the twelve months following, there was no incident of any undeclared implant. This, say the authors, "was in sharp contrast to the continuous stream of significant events earlier that had prompted our intervention in the first instance".

The safety exercise was carried out at a Scottish hospital. But "pathways for MR referral and acceptance are broadly similar throughout the UK [therefore] this survey could be usefully applied to provide further insight to other NHS centres on MRI safety issues".

Do what you say and say what you do

"Many people talk about the importance of public trust" says this report. But, it goes on, "Trust can only be earned, and that starts with understanding what people think, want and expect".

The report looks at trust and transparency in the politically fraught area of personal health and care data. It reveals a "healthy degree of scepticism among publics about whether the proclaimed benefits of better data use are actually realised in practice".

It also acknowledges "significant gaps in our understanding of people's views, most notably around the perspectives of minority and marginalised groups". It notes that "Some groups may have good reason to feel distrustful of the health and social care system and be inherently concerned that data about them could be used to target or discriminate against them".

The report's focus is development of a Local Health and Care Record system in London. The aim is to make health and care information more consistent, more joined-up and more available to the clinicians, patients and families who need it. This might be complex to implement in practice, but "there should be no barrier to providing straightforward and comprehensive answers about why, by whom and how patient data is collected, managed, protected and used". And this should be informed by meaningful engagement with patients and public - "those with rights and interests over the data".

So how can transparency be achieved in the area of personal data, where there are legitimate concerns over matters such as anonymisation and information governance? The answer, it seems is that transparency can mean different things to different people but boils down to "do what you say and say what you do".

Debates over use of data are rarely easy. But "It is incumbent upon those managing and using data to describe a clear trajectory from the collection of data to delivery of benefits. Without this, the public will have every reason to question whether the case for using data beyond individual care really stacks up".

Refusal and resistance

Dementia care is often thought of as taking place in the community, or in specialist settings and long-term care. However, as many as one in four acute hospital beds are occupied by a person with dementia, with some hospitals reporting that up to 50% of acute admissions may also have a diagnosis of dementia.

People with dementia are highly vulnerable within hospital settings, where functional abilities can deteriorate quickly. They are more likely to experience a delayed discharge, more likely to be readmitted and are at much higher risk of dying.

This study examined a common but poorly understood phenomenon within the acute setting: refusal and resistance to care. This can include getting out of bed, trying to leave the ward or hospital, shouting, and refusing food or medicine.

Reaction such as these were typically rational to the patient's perceptions. But ward staff typically interpreted resistance as a feature of a dementia diagnosis, which overshadowed the person. Chronic and disruptive resistance was viewed as a feature of the patient's identity, which could become their principal identity in the context of the ward.

The study found that refusals were "viewed by staff as problematic, difficult, signifying a lack of capacity, and, because they do not 'fit' the organisation and timetabled routines of the ward, as something that must be overcome or managed".

Staff responded with highly repetitive language, instructions to be obeyed, and containment of the person at the bedside. Raising the side rails of the bed or tucking bed sheets in tightly around the patient were common means of containing a patient within the bed. For patients sitting at the bedside, the close placement of the mobile tray table or unreachable walking frames and technologies such as chair alarms were used to contain people and keep them sitting in their bedside chair.

These approaches "created damaging cycles of stress for patients, families and ward staff". Furthermore, "approaches to... patient containment at the bedside were a response to resistance but also frequently the trigger for resistance or patient anxiety".

The study concludes that there are "powerful cultures of containment and restraint, with... work in the ward driven by the organisational demands of delivering care within fixed routines and timetables that do not meet the needs of people living with dementia". In response, the authors are developing "simple, no-cost innovations at the interactional and organisational level within wards that can be introduced and used by nurses and HCAs". The feasibility of these is currently being tested within one acute 'laboratory' ward.

Navigating the feedback maze

It is no secret that NHS staff can feel swamped by the volume of patient feedback coming from Friends and Family Test, national surveys, local surveys, complaints, social media and more.

There is broad consensus on the value of seeking patients' views. But there is less agreement about how to learn from, and act on, the mass of data gained from widespread evidence-gathering.

According to this paper, "quantitative surveys [are] the most frequently collected type of patient experience data (often mandated) but the least acceptable to healthcare teams with respect to use within quality improvement". On the other hand, there is "an apparent sense of nervousness amongst hospital teams surrounding the use of qualitative data as it is regarded as time-consuming to collect and difficult to interpret without bias".

To try to make sense of all this, the researchers looked for a way to define types of patient feedback, and to develop categories that could help clarify potential uses for the different types.

These categories might help us to make sense of the wide range of patient feedback types in use across the NHS. But do they help us to make sense of the feedback itself? Unfortunately, the paper finds that few of the routinely collected feedback types elicit "ready-to-use" data. And where useable data is easy to extract, it is "most suitable for measuring accountability, not for informing ward-based improvement".

The authors conclude that "If feedback is to be used more frequently within quality improvement, more attention must be paid to obtaining and making available the most appropriate types".

Involving patients and public in research

Patients and the public get involved in research because they want to help others, and contribute to a better healthcare system. They may also have an interest in a research topic because of relevant personal experience.

These are good reasons to involve patients and public in research and according to this report, researchers often recognise and build on these motivations. However, that is not always the case. Sometimes, for example, patients and public are included in research simply because that is a condition of the research funding.

The report aims to build a better understanding of patient and public involvement (PPI) in research, to help ensure meaningful involvement. But that in itself is a major challenge, as "there is limited agreement about how, when, and why [PPI] should best be done".

Definitions are often blurred, and PPI "lacks standard terminology". Furthermore, "Few studies evaluated the fidelity of their PPI approaches, making it difficult to know whether the approaches discussed were implemented as intended". Under these circumstances, "PPI can sometimes become a tick-box exercise".

The report looks at the research tasks and activities that patients and public can undertake, and considers enablers and challenges to involvement. It also explores questions of impact and evaluation.

The authors point out that "Some have assumed the more PPI, the better, suggesting that co-production -- the most involved of PPI approaches -- is the 'gold standard'. Others reject the idea of 'the more, the better', raising concerns that it may lead to tokenistic practice or work against meaningful involvement".

They conclude that "with careful consideration of when to do PPI... all sides can benefit from bringing real-world understandings into research about healthcare".

Putting out fires

Patient experience staff may be familiar with the idea that some types of patient complaint are perennial, pervasive and well-known.

One example is "communication" or "attitude" - a sense from patients that even if their clinical care was good, the way they were spoken to could have been better. Another is waiting times, along with difficulty getting appointments, or scheduled appointments being rearranged at short notice.

According to one nursing unit manager interviewed for this Canadian study on patient complaints, "nothing is new, but we don't have a solution".

So why is it that some types of patient complaint persist for years, without appearing to lead to institutional or system-wide improvements? The authors identify three challenges:

Firstly, the nature of the issues are well known, but difficult to address. Some clinicians, for example, simply apologise when a complaint arises about their attitude, rather than working on improving their communication style. And although training courses on communication may be well received by staff, they do not necessarily stop communication coming up as an issue in complaints year after year.

A second challenge is the use of weak change strategies. Again, there may be an over-reliance on one-off education sessions. Or improvements may be restricted to specific units, rather than rolled out across whole institutions or systems.

The third challenge is resolution of complaints outside the formal complaints structure. The study found that unit managers preferred handling patient complaints directly, as formal complaints might suggest failures in their management. Moreover, they considered the additional bureaucracy of a formal complaint burdensome, and many complaints lodged through the formal system would eventually come back to unit managers for resolution anyway. But when complaints are resolved directly, the learning - about both the problem and the solution - may be invisible to the institution as a whole.

Faced with these challenges in embedding organisational learning and improvement, patient experience staff focus instead on "complaint resolution", typically defined as addressing patient complaints in as timely a fashion as possible. Many referred to this part of the job as "putting out fires".

The authors found that "in an effort to do something rather than nothing, [patient experience staff] reach for simple and inexpensive responses". But "the daily work of 'putting out fires' and ... simply placating patients and resolving complaints as quickly as possible... may in effect suppress the patient voice".

The authors conclude that "the major categories of complaints remained unchanged year after year [which] in itself attests to difficulties in developing effective improvements from past complaints".

Neuro patience

We are all used to the big national patient experience surveys carried out by the Care Quality Commission and NHS England. These cover patient experience of maternity services, community mental health services, GPs and so on. Results are published by provider and the surveys are, essentially, a test of people's access to, and satisfaction with, services.

But there is another dimension to patient experience which is less well explored. That is people's experience of living with long term health conditions. And this really matters, given the increasing emphasis on "self-management" within NHS strategies.

So it is encouraging to see the Neurological Alliance continuing to show a lead in how patients can help to build an evidence base, and a case for change. Their latest patient experience survey highlights key areas for improvement, based on the following:
- Long delays, and a lack of access to specialists. Around a third of survey respondents waited more than 12 months to see a neurologist.
- A lack of personalised care. Only 42% of neurology patients had written information at the time of diagnosis, against 83% of people with cancer. Just 10% had been offered a care plan.
- Poor experience of social care, with many people dependent on unpaid carers.
- Disability discrimination in the workplace, and problems accessing welfare benefits.

This year for the first time the results are broken down to regional level, based on the Sustainability and Transformation Partnership (STP) footprints. The findings reveal wide geographic variation, representing a postcode lottery in access to care. And it may come as no surprise to learn that people in the most deprived areas report the poorest experiences of care.

National patient surveys run by the CQC and NHS England are valuable - helping patients and providers alike to get a sense of people's experiences within individual services. But in an NHS that is building integrated care systems, we need to understand how people experience care across services, and through pathways, and how they cope with extensive periods of self-management of their conditions.

The Neurological Alliance is uncovering evidence that can provide an important counterpoint to the mainstream national surveys. Their work deserves to be taken seriously.

Large scale change

With the advent of Sustainability and Transformation Partnerships, Integrated Care Systems and the NHS Long Term Plan, we are getting used to the idea of large scale change in healthcare. However as this paper points out, large scale change tends to be associated by the public with making cuts and downgrading services, and can be met by strong opposition.

The response is public involvement - to increase the legitimacy of decision-making, tailor publicly-funded services to local needs and resolve tensions. But what actually is public involvement?

A plethora of terms are used to refer to who should be involved: patients, service users, citizens, public, lay people, communities or consumers. And the term involvement is often used interchangeably with participation, consultation or engagement. Little is known about how involvement is understood, or operationalised in practice. It remains unclear which methods are most appropriate under different circumstances, and evidence about the impact of involvement is sparse.

This study found that in large scale change, public involvement often takes the form of a consultation model in which information flows one-way. Any public opposition is attributed to a lack of understanding of the technical arguments, implying a need to improve communication rather than offer more deliberative methods of involvement.

But sometimes the public both understand and question the technical arguments, seeking alternative routes to voice their views. As a result, two models of involvement co-exist: invited and uninvited participation.

Uninvited (oppositional) participation is often framed as an obstacle to implementation of large scale change. But, say the authors of this paper, "Political conflict is an inherent, and potentially beneficial, part of healthcare planning. Thought should be given to reframing the conflict in large scale change as positive, and how it can be incorporated into meaningful methods of public involvement".

Lost in the system

"As a former cancer patient I fear getting sick again, but it's not the disease I fear, it's being lost in the system that scares me."

These words are from Rachael Bull, a contributor to the latest edition of Patient Experience magazine. We think they should be heard by healthcare providers everywhere. Imagine being more afraid of the healthcare system than you are of cancer.

Patient experience is often thought of in terms of things like compassion and "patient-centred" care. These things matter, but both patients -- and the staff looking after them -- are let down when appointments are cancelled, records go astray and "pathways" that look good on paper turn out to be impossible to navigate in practice.

Another contributor - Cancer Mum - has a similar story. As a long term carer for her disabled son, she had to fight for access to his records. But she then found herself with a record containing hundreds of document and consultation entries that had not been indexed and so were useless.

These are powerful illustrations of why we need to see things from the patient's point of view. For healthcare professionals, an overly complex system can be exasperating. For patients, it can be life-threatening.

So it is good to see the NHS Leadership Academy taking matters such as these seriously. Our third contributor, Karl Roberts, talks about the importance of developing patient leaders with the skills and confidence to take their experiences into senior levels of healthcare organisations.

Healthcare systems need to hear from people like Rachael and Cancer Mum. But they also need to embed individual stories in a solid base of evidence. So the magazine includes our usual round-up of the latest research on patient experience and involvement, with summaries to help you get quickly to the information you need.

Inpatients speak out

The Care Quality Commission's Adult Inpatient Survey has now been running for 15 years, but as the CQC says, "every year brings a new perspective". So what do this year's results show?

As always, there is good news. Trust in doctors and nurses remains relatively high, most patients (over 90%) report that they had enough privacy, and communication between patients and staff remains a positive experience for most. Patient satisfaction with hospital food has improved over the years, with the proportion of those saying that it was "very good" increasing from 19% in 2009 to 23% in 2018.

Alongside this, however, are areas that consistently show poor patient experience, including waiting times, the quality of information and involvement around hospital discharge, and experience of integrated care.

Patients' reports of problems with waiting times have been corroborated by the House of Commons Public Accounts Committee, which has deemed it "unacceptable that less than half of NHS trusts meet the waiting times standard for elective treatment, and only 38% meet the standard for cancer patients". The committee is concerned that national bodies "appear to lack curiosity regarding the impact of longer waiting times on patient outcomes and on patient harm".

Hospital discharge is a longstanding source of dissatisfaction for patients, with Healthwatch reporting back in 2015 (and many times since) on the problems.

The survey also finds that "people's experience of the integration of their care has got worse". 18% of respondents said they did not know what would happen next with their care when they left the hospital, and nearly a quarter of patients (24%) said they did not get enough support from health or social care professionals to manage their conditions after leaving hospital

The CQC concludes that "While last year we reported on a system still delivering improvements in patients' experiences despite growing pressure, this year, the improvement is not sustained. In 2018, there is a lot of evidence to suggest that pressure on the system is having a real impact on patients' experiences of care".

Care deserts

This report, commissioned by Age UK, looks at the geographical lottery for residential and domiciliary care. It argues that some parts of the country are turning into 'care deserts' - areas where even if you have money to spend on care, you will be unable to get it.

The report makes the point that "With still no sign of the Government's green paper, the social care system has been left waiting for over two years for the Government to set out its vision for the long-term sustainability of the system". It observes that "There have been four independent reviews, five consultations and seven government policy papers focused on social care in the last 20 years without a meaningful change to the system".

The result, it says, is a social care workforce crisis, and a reduction in the number of both care home and nursing home beds, at a time of rising need. It describes a dysfunctional market for social care, and states that "The needs of some older people must be going unmet, or they face travelling a long way to get into a care home, or their families and friends have to care for them instead. In [some] areas the care market has ceased to function and there is no care to be had".

The report refers to the Care Quality Commission's 2015/16 State of Care report which raised concerns that social care was reaching a 'tipping point'. It goes on to state that "in some places that tipping point has now been passed".

The report pulls no punches about the lack of an effective political response. It states that "while 'Brexit sucks all the political oxygen out of the air'... social care is gradually rotting away".

Body image matters

This report opens with the observation that "for too many of us, our bodies are sources of shame and distress".

It backs this up with statistics: for example that during the last year, one in five adults felt shame, just over one third felt down or low, and 19% felt disgusted because of their body image.

This matters because higher body dissatisfaction is associated with a poorer quality of life, psychological distress and the risk of unhealthy eating behaviours and eating disorders.

Body image concerns have been found to be more prevalent among people who are overweight or obese. But there are further issues relevant to body image and mental health that are specific to certain factors and experiences. These include pregnancy, the effects of long term health conditions, menopause, and ageing. Cultural differences around body ideals, and gender and sexuality also play a part.

The report is clear that developing healthy attitudes towards body image is not simply a matter for each of us individually. It considers how attitudes are shaped by advertising and social media, and how better industry regulation, combined with stronger public health initiatives, can make life better for everyone.

Raising the equality flag

This study takes as its starting point the fact that most LGBT people aged over 50 were born when being gay was effectively illegal in the UK. Some may have hidden their LGBT identity - and from a health perspective, this could have led them to hide aspects of their own health for fear of "outing" themselves. For others, it could have fostered a reluctance to engage with health services for fear of discriminatory attitudes by health care providers.

The study looked at the health and care needs of older LGBT people across four categories: physical health and access to health care; access to social care and end-of-life care; experiences around loneliness, social isolation, and mental health; and experiences of violence.

It found that LGBT men and women aged 50+ have poorer self-rated health and are more likely to have other conditions that impact their health and wellbeing. This matters because poor self-rated health is a strong predictor of future mortality and is also used to determine healthy life expectancy and disability-free life expectancy.

There are implications for policy and practice: bodies like Public Health England are required to work toward reducing health inequalities, while local authorities have a duty to advance equality established in the Equality Act 2010. In spite of this, responses are patchy. For example, an information standard for monitoring sexual orientation is now available to all NHS organisations but use of the standard is not compulsory.

The report makes the point that specialist or targeted services rarely exist outside certain cities in which there are higher concentrations of LGBT people. But it goes on to say that while there is value in targeted/specialist services in certain areas of the country, greater effort must be made to improve the inclusivity of mainstream service provision.

Screening patients out?

Health screening hit the headlines a year ago, when Secretary of State Jeremy Hunt announced that there had been a serious failure in the English breast screening programme.

Subsequent investigation found that the error was more administrative than clinical. A new service specification did not align with the IT system then in use, and was not consistently implemented by breast screening units. No-one in the Department of Health and Social Care, Public Health England or NHS England had realised.

One year on, the House of Commons Public Accounts Committee has taken another look at health screening.

Its report says that screening is an important way of identifying potentially life-threatening illnesses at an early stage. Yet the Department of Health & Social Care, NHS England and Public Health England are not doing enough to make sure that everyone who is eligible to take part in screening is doing so, and do not know if everyone who should be invited for screening has been.

The committee took evidence on the management of four health screening programmes operating in England: bowel, breast and cervical cancers and abdominal aortic aneurism. None met their targets for ensuring the eligible population was screened in 2017--18.

Performance varies drastically across the country and yet the national health bodies still do not know which specific barriers prevent certain groups from attending meaning they cannot effectively target these groups to encourage them to attend.

National health bodies therefore run a constant risk of not knowing if all the people who should have been identified for screening have been. At the centre of this, the national oversight of screening programmes has failed patients, resulting in thousands of women not being invited for breast and cervical screenings or waiting too long for their cervical screening results.

The committee concludes that national health bodies have been too slow to recognise and respond to the problems caused, including sufficiently holding local screening providers to account for long-term failure.

Cwm Taf women's voices

The official review of maternity services run by the Cwm Taf Health Board has now been published. It was triggered by the identification of 43 potential Serious Untoward Incidents that included stillbirths, neonatal deaths and complications of pregnancy or delivery.

Our featured report this week is a record of the public engagement exercise that ran alongside the official review. The aim was to assess whether services were woman-centred, open and transparent.

The authors found that "overwhelmingly, the women and families who came forward... spoke about distressing experiences and poor care". The result was "both physical and psychological impacts on them and their families"..

In a dismaying echo of the Morecambe Bay investigation, "Women repeatedly stated they were not listened to and their concerns were not taken seriously or valued". In the worst cases, "they were ignored or patronised, and no action was taken, with tragic outcomes including stillbirth and neonatal death of their babies".

Women's sense of not being heard was compounded by other factors including:
- Lack of access to all appropriate information, including notes
- Lack of comprehensive investigation resulting in incomplete responses to concerns
- Focus on providing responses that were formulaic and seemed to be more interested in defending the reputation of individuals and the Health Board
- Failure to apologise, causing distress

We have heard all this before - not just at Morecambe Bay, but at Mid Staffs, Southern Health, Gosport and in the Northern Ireland Hyponatraemia inquiry.

The report states that "Already, work is being undertaken to use the lessons from the poor experience of those families... to change culture and behaviour". That news is welcome - but it is not enough. Bill Kirkup, author of the Morecambe Bay report said, "It is vital that the lessons, now plain to see, are learnt and acted upon, not least by other Trusts, which must not believe that 'it could not happen here'." So we hope that all providers of maternity services - even those that think they are doing a good job - will take the Cwm Taf review as a signal to revisit their own practice in hearing and acting on feedback from patients.

Staff vs culture

Just over a year ago, we carried "Ignoring the Alarms" as the featured report in our weekly newsletter.

The report, from the Parliamentary and Health Service Ombudsman, told of "multiple serious departures from the standards of care expected" which had led to the avoidable death of Averil Hart, a young woman who had anorexia nervosa.

Today, a House of Commons inquiry looks further into those failings, taking in not just the clinical care of the patient, but also the treatment of bereaved relatives who subsequently tried to find out what had gone wrong.

We have submitted evidence to that inquiry, setting the PHSO's findings alongside similar findings from academic research, regulatory bodies, and other official inquiries. Our submission might make for uncomfortable reading.

We all know that there are staff right across the NHS who want the best for patients, and understand that "patient experience", in its broadest sense, is every bit as important as clinical care. But they are being let down - by Boards who won't take patient experience seriously enough, by clinicians who cannot see patient complaints as grounds for quality improvement, and by organisational cultures which inhibit change.

The Chief Inspector of Hospitals has recently commented on progress in learning from deaths. He said that "...the same issues persist... issues such as fear of engaging with bereaved families". And he warned that "the current pace of change is not fast enough".

With the publication of the Cwm Taf report, and with the Shrewsbury and Telford review coming soon, we need absolute honesty about shortcomings in the way that patients and relatives are treated when things go wrong. Otherwise, as Bill Kirkup said in the investigation into the Morecambe Bay scandal, "we are destined sooner or later to add again to the roll of names".

Questionnaires versus online feedback

Patient feedback is integral to safety and quality of care. And an NHS that aims to be person-centred needs to understand patient experience really well.

Attempts to understand patient experience often involve structured questionnaires. But in a digital age, more and more people are bypassing formal surveys, and giving feedback online.

This study looks at the requirement to include patient views in regulatory processes such as medical revalidation. It asks whether questionnaires are tackling the right questions in the right way, and whether they align with the kinds of issues that patients address in online feedback. The study focused specifically on patient experience of psychiatric care.

A key finding is that patients describe some different measures of psychiatric care quality online and use different terminology to those used in questionnaires. This may reflect the acknowledged exclusion of patients and the public in the design, administration and evaluation of patient feedback questionnaires, accentuating the importance of coproduction.

Another finding is that when psychiatric patients discuss their care online, they rarely focus on the care provided by a single psychiatrist alone. Other healthcare individuals, services, systems or processes are also described. The authors suggest that the current GMC revalidation requirement for patients to disaggregate the care provided by an individual practitioner from the wider healthcare team, service or environment is therefore unhelpful.

Timeliness matters too. Working online, patients can offer feedback as and when they need to. But, say the authors, "The current requirement to collect patient feedback so infrequently (once every five years) sends the message, whether intentional or not, that patient feedback is unimportant".

The study concludes that "The sharing of healthcare experiences online could help create desirable and dynamic transparency to the benefit of both current and future patients".

A hostile environment for care

"There is now clear evidence that The National Health Service (Charges to Overseas Visitors) (Amendment) Regulations 2017 are deterring vulnerable groups from accessing NHS treatment, threatening public health, and taking vital clinical time away from patient care."

This opener to a new report from the BMA sets the scene for a strong challenge to government on its rules for charging 'overseas visitors' for accessing NHS services in England.

The rules, introduced in 2015, are seen as part of the government's "hostile environment" for immigration. They were updated in 2017, to expand charging to community services, introduce upfront charging for non-urgent care, and require NHS services to record patients' eligibility for free treatment.

The Department for Health and Social Care (DHSC) announced a review in December 2017, less than two months after the updated rules came into force, and before some providers had had time to fully implement them, let alone assess their impact. DHSC says that the review found no evidence of the regulations deterring patients from accessing care - but it has said that the findings of the review will not be published.

The BMA's report is based on a survey of its members, and refers to patient experience as outlined in reports such as Maternity Action's What Price Safe Motherhood. It finds that patients are, in fact, deterred from seeking care, "including for treatments that are not chargeable". It states that "vulnerable groups are being, and will continue to be, negatively affected by the regulations".

The BMA is calling for publication of the findings of the DHSC review, and for "the introduction of safeguards to ensure that vulnerable populations are not deterred from seeking care, are able to access the care they are entitled to and that necessary treatment is not denied due to difficulty or delay in proving eligibility".

Pulling in different directions

For some years now, there has been talk of "parity of esteem" between physical and mental health. This has been defined as "valuing mental health equally with physical health" and has been seen as a way to raise standards of care for people with mental health conditions.

But how do we assess "value" in mental health services and treatments? What outcomes should we be looking for, and how would we measure them? This paper from the King's Fund makes the point that "Even the briefest discussion with service users shatters the illusion that agreeing these outcomes will be an innocuous administrative exercise".

It goes on to say that, "While there are many strong partnerships between service users and NHS services, there was also evidence of profound differences in perspective on what is important and even, at times, outright hostility and distrust between the two sides".

Some service users are suspicious of "narrow clinical" responses to illness, and "oppressive interventions" such as restraint and seclusion. NHS staff, for their part can feel "accumulated demoralisation when they see the same patients in their clinics, caught up in the same cycles, struggling to make progress".

This leads to a risk that "people with mental health problems are among the 'problem patients' of modern health care - those that seem to rub the system up the wrong way and wear professionals down with their stubborn refusal to be cured".

In this context, the task of defining "value" in mental health services, along with desired outcomes, is very difficult. "The outcomes prioritised, and those discounted, inevitably reveal the degree of influence of different voices in the discussion - those around the table and those outside the room."

The report reflects on the advantages and disadvantages of current approaches, and makes some suggestions for the future. It concludes that "we cannot usefully direct mental health services to the dogged pursuit of particular outcomes until there is a broader consensus on which outcomes really matter".

And with "service users, professionals and different professions... pulling in different directions... it is also clear that some sort of reconciliation is urgently needed".

Must we bust the trust?

"Although patients desire safe care, they are reluctant to perform safety-related behaviors when they worry it could harm the relationships they have with clinicians."

The opening statement from this week's paper lays bare the reality of safe practice in healthcare settings. Safety is not simply a matter of well-trained staff following the right procedures. It is also culturally influenced, depending on the quality of relationships between clinicians and patients.

This American study finds that interventions tend to focus on giving patients access to information about their own care, but generally do not attempt to influence the clinician-patient relationship. Yet, the clinician-patient relationship influences patients' willingness to engage with their safety.

In particular, patients are reluctant to engage in safety behaviour that requires them to digress from the traditional patient role by questioning or challenging clinicians' judgments. Perceptions of staff time pressure, fear of negative reactions from clinicians, and the fear of being seen as a "difficult" patient have been found to inhibit patient engagement in safety.

Sometimes, in an apparent reversal of the doctor-patient relationship, it is patients' concerns for the wellbeing of clinicians that drives behaviour. Some patients "exhibited a desire to protect their clinician' emotional or professional needs that at times interfered with their desire to engage with their own safety". Others "were reluctant to report undesirable events because of their concern over repercussions to hospital staff".

The authors suggest reframing safety behaviour as a co-operative act. One example is to provide a shared safety checklist with tasks assigned to both clinicians and patients. Transparently assigning tasks to both parties could help cultivate a sense of teamwork between patients and clinicians, especially if patient participation is framed as helping clinicians and contributing to the team, rather than simply ensuring personal safety.

The paper finishes with a warning about the development of new technology. Because the importance of the clinician-patient relationship to safety, technologies should be used to supplement face-to-face communication, rather than completely replacing that communication.

Stop measuring, start learning

Why is there a seemingly endless debate about the "impact" of patient and public involvement (PPI)? It's as though we can't accept that dialogue between patients and professionals is intrinsically a good thing. We have to justify it through complicated and time-consuming "impact measurement".

The authors of this paper argue that PPI professionals are unduly influenced by clinical practice, which uses interventions to treat medical conditions in ways that can be objectively evaluated. But is it sensible to conceptualise involvement as a "measurable intervention"?

The paper suggests an alternative approach that sees involvement as "conversations that support two-way learning". Instead of a "correct method" for involvement, it advocates varying approaches, tailored to the context and the needs of the individuals involved. Crucially, the quality of the interaction between professionals and public becomes more important than the process.

Still - the question remains: how do we know whether involvement actually makes a difference? According to the authors, obtaining "robust evidence" of the outcomes of involvement may not be possible or appropriate. For them, researchers' subjective accounts of what they learnt through involvement represent an equally valid way of knowing whether involvement has made a difference.

The paper argues for different approaches to evaluating and reporting involvement. These could share researchers' personal accounts to describe what was said and learnt by whom (short term outcomes), what changes were made as a result (medium term outcomes), and the long-term, wider impacts on the research culture and agenda.

The power of two truths

What happens when two or more versions of truth, otherwise in conflict, come together to create a new version of the truth?

That is the question posed by Jessie Cunnett in the latest edition of Patient Experience Quarterly. She makes the point that when it comes to issues of patient safety or fitness to practise, different stakeholders have different ways of understanding what matters. Clinicians start from a medical perspective. Lawyers want to determine right and wrong. Patients and their relatives work from subjective experience.

As Cunnett sees it, professional regulation in its current legalistic form is not keen on subjective accounts. It wants to identify statements of fact so that all doubt is removed. But for her, the facts must be judged in context. And the patient experience is an essential part of understanding evidence roundly and in a meaningful way.

Our other contributors pick up the idea of differing - sometimes conflicting - truths. Mark Hudson nearly died - and that changed his life for the better. He has dyslexia - and gets his ideas across through his writing. His dream of being a doctor was shattered - but he is able to help people recovering from the experience of intensive care.

Liza Morton nearly died as a baby, and then became, in her own words, a "medical curiosity". She owes her life to science, but wonders whether there is more room for recognising the emotional toll of treatment - for both patients and clinicians.

Mark's and Liza's stories show that in healthcare, objective science and subjective experience are closely intertwined.

There are yet more truths to be found in our round-up of the latest studies and surveys on patient experience. Our mission (in a "post-truth" world) is to put patient experience work on the same evidence-based footing as clinical work. So it is heartening to see excellent evidence being produced by academics, charities and government bodies. We continue to collate, catalogue and preserve as much of it as we can.

Changing the culture of care

Several of our previous newsletters have touched on the subject of learning from deaths. That's because there can be no worse experience in healthcare than the avoidable death of a loved one. The experience is even worse when bereaved relatives feel locked out of investigations, and have to fight - sometimes for years - to get the truth.

The current investigation at the Shrewsbury and Telford Hospital NHS Trust is just the latest in a series of such cases, taking in Mid Staffs, Morecambe Bay, Southern Health, Gosport and the Northern Ireland Hyponatraemia inquiry.

Against this background, the National Quality Board has issued guidance on learning from deaths. This report from the Care Quality Commission looks at how - and whether - NHS Trusts have been implementing the guidance.

It paints a mixed picture. Right at the start of the report, the Chief Inspector of Hospitals says, "... we are concerned that we are still seeing the same issues persist in some NHS trusts more than two years on. Issues such as fear of engaging with bereaved families, lack of staff training, and concerns about repercussions on professional careers, suggest that problems with the culture of organisations may be holding people back from making the progress needed".

Happily, some Trusts have been more active in adopting the guidance, and the report gives examples, along with detailed case studies illustrating both challenges and practical solutions. These make it clear that "there is no one factor that guarantees good practice, with enablers and barriers to implementing the guidance being interrelated. However... the existing culture of an organisation can be a key factor in trusts'implementation of guidance".

That question of organisational culture is important, as it clearly influenced developments at Mid Staffs and elsewhere. And on this point, the Chief Inspector sounds a warning note: "Cultural change is not easy and will take time. However, the current pace of change is not fast enough".

Public satisfaction on the slide

"In 2018, the outpouring of affection that accompanied the NHS's 70th birthday did not stem falling levels of public satisfaction with the service."

So say the King's Fund and Nuffield Trust in their annual overview of public satisfaction with the NHS and social care.

The report highlights various points of detail - for example that older people were more satisfied than younger people, and that supporters of the Conservative party were more satisfied than supporters of the Labour party. And within the overall picture, there is good news - for example, that satisfaction with inpatient services is at its highest level since 1993, and satisfaction with outpatient services is at its highest level since the survey began.

However, the authors point out that the data gives its richest insights when viewed over decades rather than years. So the 2000s were characterised by increasing satisfaction, while the 2010s are characterised by decreasing satisfaction. And although levels have fluctuated, the broad trend shows a falling level of satisfaction, which in 2018 was 16 percentage points lower than in 2010.

The four main reasons for satisfaction were the quality of care; treatment free at the point of use; the range of services available; and the attitudes and behaviour of NHS staff. Conversely, dissatisfaction arose from long waiting times; staff shortages; a lack of funding; and money being wasted.

The report concludes that with less firm commitments to reducing waiting times than in the past, and the government's strategy for dealing with critical workforce issues still outstanding, we must wait to see when the decade-long slide in public satisfaction with the NHS will come to an end.

Patient involvement in animal research

This report opens by stating that "Patient and Public Involvement and Engagement (PPIE) is increasingly embedded within healthcare research".

It notes that "lay people" can become involved at various points within research processes. And increasing openness within the research community means that patient and public involvement is ever more extensive. So perhaps we need to start raising questions about PPIE and animal research.

The study found that patients and public can see value in opening up conversations about animal research. It can help to alleviate anxieties by providing opportunities to learn more about how animals are used. But for some people, being involved in research that uses animals is an ethical and emotional challenge.

Funders often believe patients and public should be involved with all types of research, including animal research. However, there is also apprehension about how to organise PPIE around animal research, how to manage potential concerns, and whether it can make a meaningful difference to research.

For researchers using animals, PPIE can be an opportunity to engage people's lived experience and help ensure research will be meaningful and beneficial. However, these conversations can be uncomfortable and there are challenges around how best to communicate and listen.

The authors see public involvement with animal research as an emerging area, informed by changing research cultures of communication and openness. And as PPIE practices are increasingly embedded in research funding and strategy, public involvement with animal research is likely to become more common.

This may not be easy - many people could find it challenging having conversations about animal research. But, say the authors, there are also potential problems from not having these conversations for research transparency, authentic engagement, and research translation.

Reducing readmissions

Towards the end of 2017, Healthwatch England published a briefing on emergency readmissions to hospital. It noted that numbers had been rising for some years, and said that in 2016/17, over half a million emergency readmissions had been reported across 84 hospital Trusts.

Worryingly, only four of the 125 Trusts contacted were able to provide information outlining the reasons for emergency readmission. Many Trusts explained that the information was not kept electronically, or was stored on paper records, making it too difficult to analyse.

Our featured report this week sheds some light on the matter - and interestingly, its starting point is not medical records kept by healthcare providers, but the perceptions of patients who have experienced hospital readmission. Furthermore, it did not concern itself with in-hospital discharge procedures, but looked instead at the challenges patients face after leaving hospital, including social determinants of health (SDoH) such as safe housing, food access and economic stability.

The study found that high proportions of patients cited non-medical factors as reasons for readmission. There was an increased risk of preventable readmissions associated with a history of homelessness, substance use disorder, or at least two unmet SDoH health related needs. Indeed, patients with at least two unmet SDoH needs were almost three times more likely to have a preventable readmission rather than a non-preventable readmission.

The authors state that their data underline important vulnerabilities and reflect the growing complexity and evolving scope of current medical practice.

The study was conducted in America so may not, on the face of it, be directly applicable to the UK. However, the NHS Long Term Plan sets a clear steer towards personalised care and integrated services. That means understanding people's personal circumstances, and co-ordinating a range of services around the individual. In this context, closer joint working between health services, social services and voluntary organisations could be a way to ensure successful hospital discharge and fewer readmissions.

Sweet dreams are made of this

"Disruption to sleep is known to interrupt recovery and increase the chances of poor health and wellbeing." So says the Care Quality Commission in its most recent Adult Inpatient Survey. In spite of this, the survey findings show that 1 in 5 patients were bothered by noise at night from hospital staff.

Our featured report this week is an American study which starts from a similar premise: "Although sleep is critical to patient recovery in the hospital, hospitalization is not restful, and inpatient sleep deprivation has been linked to poor health outcomes".

The study tested the effectiveness of the SIESTA intervention - based on patient and staff feedback, from which "overnight vitals, medications, and phlebotomy were identified as major barriers to patient sleep".

One important finding was that some sleep disruption was due to basic system errors as opposed to uncaring staff. For example, the electronic health record contained various default settings, but physicians did not know how to change the default vital signs order 'every 4 hours'. They were also unaware of how to batch-order morning phlebotomy at a time other than 4:00 am.

The SIESTA system was introduced to two general medicine units, but in one it was enhanced with nursing education and empowerment. This included giving nurses pocket cards describing the mnemonic SIESTA (Screen patients for sleep disorders, Instruct patients on sleep hygiene, Eliminate disruptions, Shut doors, Treat pain, and Alarm and noise control). Nurses were also coached to collaborate with physicians to implement sleep-friendly orders.

In both units, the intervention was associated with a significant reduction in orders for overnight vital signs and medication administration. However, addition of nursing education and empowerment in the SIESTA-enhanced unit was associated with fewer nocturnal room entries and improvements in patient-reported outcomes compared with those in the standard unit.

The authors conclude that "even when sleep-friendly orders are present, creating a sleep-friendly environment likely depends on the unit-based nurses championing the cause".

The community value of community hospitals

In some parts of England, Sustainability and Transformation Plans have led to battles over the future of community hospitals. To health service managers, the institutions can sometimes appear outdated, poorly located and possibly no longer fit for purpose. To local communities, they can represent cherished assets, where generations have been cared for, and for which "Friends of" groups have tirelessly fundraised.

For this study, the starting point was that there is no agreed definition of what a community hospital is. Furthermore, little is known about patients' experiences of them or how they are supported and valued by local people.

The study found that patients and carers experience community hospitals as qualitatively different from other settings. Key to patients' and carers' experiences of community hospitals was their closeness to "home" through their physical location, environment and atmosphere. Relationships also counted - particularly community hospitals' provision of personalised, holistic care; and their role in supporting patients through difficult psychological transitions.

A further finding was that community hospitals are highly valued by their local communities. People support their hospitals through giving time, raising money, providing services and giving voice. This can contribute to hospital utilisation and sustainability, patient experience, staff morale and volunteer well-being.

The study concludes that community hospitals enable the provision of local intermediate care services, delivered through an embedded, relational model of care, and generating deep feelings of reassurance. However, it says that current developments (including the withdrawal of GPs, shifts towards step-down care for non-local patients and changing configurations of services, providers and ownership) have the potential to undermine these positive experiences and values.

So where do unsafe cultures come from? Sometimes they can arise from the visible effects of poor leadership, bullying of staff, or workforce pressures.

But some influences on culture are less visible. When culture is just "the way we do things around here", staff can become oblivious to the ways in which their behaviour and attitudes can affect patient safety.

One example is the language that is commonly used to describe patient feedback. We can start with the language of "complaints".

When a health professional flags up something that has gone wrong, it is called an incident report. But when a patient does the same, it is called a complaint. The word "complaint" is synonymous with words like "objection", "grievance" and "criticism". Culturally, it creates a tone of negativity.

So it is perhaps unsurprising - as we have already reported - that some health professionals see complaints as "a breach in fundamental relationships involving patients' trust or patients' recognition of their work efforts". Within a culture like this, it can be "rare for [professionals] to describe complaints raised by patients as grounds for improving the quality of care".

A similar language problem affects wider patient feedback (patient surveys, focus groups, social media posts) - frequently described as "anecdotal evidence". The term indicates a cultural tendency to see patient feedback as subjective, irrational, and potentially unreliable.

A "just safety culture", as called for in the draft patient safety strategy, would make it clear to patients that their feedback was valued and would be acted on. It would treat patient stories as valid evidence, having equal weight with clinicians' stories, set down in their written notes.

Healthcare providers could start down this path by changing their language. They could start describing patient complaints as a form of incident reporting, complementary to that practised by staff. And they could recognise that reference to patient feedback as "anecdotal evidence" is indicative of a dismissive and disrespectful safety culture, and should not be tolerated.

Rare disease and mental health

We recently touched on the experiences of parents who have children with rare diseases. The study, from Canada, described a complicated experience, with numerous doctors' appointments, and the need for persistence in pursuit of a definitive diagnosis. It found contentious relationships with healthcare providers, and a lack of formal care co-ordination and communication between services.

This UK study touches on similar issues, and explores the effect on the mental health of adult patients living with rare disease, and their carers.

The report is based on a survey which found over 90% of respondents feeling low, stressed or worried about their condition. 88% have felt emotionally exhausted, and 70% have felt at breaking point.

Over 80% of respondents put feelings of this kind down to health professionals having a poor awareness of their condition, along with a sense of not being believed. Mislabelling and misdiagnosis can delay the start of appropriate management and treatment, and can also prevent people from seeking help.

In spite of this, around half of patients and carers affected by rare disease are never asked about their mental health.

Healthcare professionals might be tempted to think that rare disease is a niche topic. And it is true that a single rare disease may affect a relatively small number of people. But there are over 6,000 known rare diseases, so a much larger number are affected overall.

The report is clear that awareness among healthcare professionals needs to improve. Understanding the patient and carer experience might be a good place to start.

Patient powered resilience

We all know that our healthcare system struggles at times. Newsfeeds routinely contain stories of workforce pressures, finance pressures, and - at this time of year - winter pressures.

The answer, according to some, is "resilience". But what does that actually mean?

For the authors of this paper, resilience "is an attribute of a system that allows it to flex and adapt to unpredictable circumstances". They explain that "flexibility may be what is needed to allow care delivery to meet the needs of varying conditions, to produce positive outcomes, and importantly, to support more patient-centred care".

That might sound like a cue for hollow laughter from staff trapped in highly inflexible IT systems, reporting requirements, management procedures and so on. But help might be available from an unexpected direction - the patients.

The paper observes that patients, families and carers sit within and outside and across organisational boundaries. "Their movement across... boundaries means that they are uniquely positioned to understand how different system components work, often in ways that elude the understanding of professionals".

From this perspective, they may be able to act as knowledge brokers, filling structural holes and helping to "manage the inconsistencies and unwanted variability in the care system".

Examples include "undertaking their own reconciliation of their medications following discharge from hospital, or proactively contacting their GP or community pharmacy where medications have been changed".

Patient and public involvement is often thought of in terms of how to "reach out" to service users, and encourage them to contribute to professional agendas for service delivery. But this paper argues that "What is needed is to provide everyday opportunities for [patients] 'reaching in' to healthcare systems", bringing with them "a unique source of insight and resilience".

Patient, study thyself

Patient and public involvement (PPI) is a topic frequently discussed by health professionals and researchers. Good practice and ethics are important considerations - so the debate is often about how to "empower" patients, rather than simply exploit their experience and goodwill.

But what happens if patients stop waiting to be empowered, and simply start conducting research on themselves, and on their own terms?

The idea may sound bizarre - dangerous even. But modern medicine is built, at least in part, on knowledge gained by pioneering doctors who have experimented on themselves. So if it's ok for doctors, why not for patients?

This paper outlines examples of patients with complex medical conditions who - singly or in groups - have tested drug treatments, monitored disease progression, and developed home-made technological devices. They have published their results - not through academic journals, but through online forums which also offer shared knowledge and peer support.

We have previously discussed the way in which health professionals debate different types of patient/public involvement, without necessarily realising that their own roles can chop and change in the process. Is it time for professionals to stop talking about how they "involve" and "empower" patients, and start talking instead about how they partner with, and learn with patients?

Let's be clear: we do not advocate patients experimenting on themselves. But as this paper shows, some patient groups are heading in that direction. Health professionals - and their debates - may need to find ways to keep up.

Tattoo you

We're starting 2019 as we mean to go on - with an edition of our quarterly magazine packed with news, views and insight.

Our contributors include the Mighty Casey Quinlan - activist, comedian and cancer survivor. Tired of hearing empty promises about better record-sharing with patients, Casey devised her own version of an electronic health record via a QR code tattooed to her chest.

We're not recommending that other readers take such radical action! But we see Casey's assertive stance as similar to the #wearenotwaiting movement, whereby patients stop waiting to be "empowered" and simply take matters into their own hands.

Our other contributors - Jen Gilroy-Cheetham and Leigh Kendall - take their own stances on the need for health professionals to understand what matters to patients.

Jennifer makes the point that "The day to day activities and rituals that are familiar to staff, aren't for the patient". Her request is that staff take the time to make sure patients understand - really understand - what is happening. For Leigh, "Great communication isn't automatic, it's something you fight like hell to achieve". One example is that with death being a taboo topic, staff may prefer to avoid talking about it. But assumptions about patient sensitivities can be disempowering and - ironically - insensitive.

The magazine also includes some excellent studies and surveys that have been published over the last few months. At the risk of blowing our own trumpet, we have included a couple of our own pieces that were picked up by the Journal of Clinical Nursing and the Canadian think tank, Policy Options.These make the case for an evidence-based approach to patient experience, and suggest ways in which the evidence could be better organised, and therefore better used.

We have various plans and projects in the pipeline for 2019, and will reveal them via this newsletter over the coming weeks. But for now, put the kettle on, download your copy of the magazine, and enjoy!

Singalong patient engagement

Since we launched the Patient Experience Library, we have catalogued over 50,000 documents on patient experience and patient/public involvement. This one may be the most genius, or possibly the most bonkers, of the lot.

The authors note that patient engagement in research (PER) is "still an emerging approach with debated definitional and operational frameworks".

However, rather than add to the plethora of conceptual constructs, this team has produced "an impressionistic illustration of the challenges and issues that can be found in the universe of patient engagement in research".

Basically, they have made up a song.

Better than that, they have set it to the tune of a 90's hit single, "What is Love", by Haddaway - a song described by Billboard magazine as a "glorious pop/house ditty".

The original contains such deathless lyrics as, "Baby, don't hurt me, Don't hurt me no more, What is love? Yeah". But the reworked version achieves far greater heights of emotional intensity, addressing "themes related to PER operationalization as well as the obstacles and pitfalls in rebalancing the researcher-patient relationship".

The paper states that "Too often, patients and researchers live in parallel realities". In the new lyrics, that tension is "evoked by the repetition of the same questions and incessant requests to get an explanation of what PER really is and what actually goes wrong". That, surely, is something we'd all like to know.

This is a great paper which we thoroughly recommend to all our readers. If you want the tune, you can get it here, along with some not at all clichéd imagery.

Hot spots and blind spots

Our featured report last week looked at the overwhelming nature of patient feedback. It described how hospital staff struggle with a mass of feedback from multiple sources. They reported "feeling overwhelmed and fatigued by the volume and variety of data that the Trust collected".

Formal complaints are one of the sources of feedback - but the authors stated that "it was rare for complaints to be used as grounds for making improvements". The focus was on "the timeliness of response to complaints and on trying to reduce the volume of them rather than an understanding of what an effective response looked like". Part of the problem was that "staff did not have the required skills to be able to perform sophisticated analytic tasks on the data they received".

This week's paper tackles similar issues. It makes the point that complainants are often motivated by the desire to "correct an ongoing problem or prevent recurrence". Importantly, they can have "valid information that the institution does not know or has failed to take sufficiently seriously". However, "The use of health care complaints to improve quality and safety has been limited by a lack of reliable analysis tools and uncertainty about the insights that can be obtained".

The solution, according to the authors, is to develop data-driven approaches to understanding and learning from complaints. The method involves focusing on three key areas: harm hot spots, near-miss hot spots, and institutional blind spots.

Hot spots of serious harm were safety problems during examination, quality problems on the ward, and institutional problems during admission and discharge. Near misses occurred at all stages of care - and the authors found that patients and family members were often involved in error detection and recovery.

One type of blind spot is hospital discharge, where transfer of care, sometimes involving multiple services, can lead to errors which may go unnoticed by providers while being obvious to patients. Crucially, "the more stages and staff groups a patient trajectory entails, the more likely that the patient is the only person who was present for each encounter. Accordingly, health care complaints are particularly suited to providing insight into continuity of care issues".

Unusually, the research did not confine itself to simply exploring the issues. In this case, the researchers went further - developing an analytical tool and testing it in the course of the study. Healthcare providers wanting to get a better understanding of complaints would do well to take a look at it.

The authors conclude that "health care complaints provide added value because they are patient-centred, focus on problematic care episodes, and provide an end-to-end account of care that includes concrete details not captured in incident reports or case reviews".

The overwhelming nature of patient feedback

"All feedback collected ideally needs to have the ability to be meaningfully used by those providing frontline care. Otherwise, it becomes unethical to ask patients to provide feedback which will never be taken into account."

So say the authors of this paper, which visited three hospital sites to ask "what is impeding the use of patient experience feedback?"

It might come as no surprise to hear that "the most striking element is the overwhelming nature of the industry of patient experience feedback. Ward staff... reported feeling overwhelmed and fatigued by the volume and variety of data that the Trust collected".

Difficulty in managing the sheer volume of feedback was compounded by other factors including:- layers of hierarchies and bureaucratic processes surrounding data collection which were said to be to be confusing to staff and patients alike. - not enough staff or appropriate expertise... to be able to work effectively to produce meaningful conclusions from the data they received. - fractured and disparate teams [who] struggled to make sense of the data or to be able to assist ward staff to do so.

Furthermore, "timeliness was seen as one of the main concerns with it being difficult to engage ward staff with data that are not real time. A specific example of this is the NHS Inpatient Survey where patient feedback is viewed months after it has been collected".

These practical barriers to making use of patient experience feedback sit alongside a cultural barrier within the hospitals that were studied. "Patient experience was sometimes said to be the poor relation of patient safety and finance with a lesser emphasis and priority placed on it."

According to the paper's authors, "The participants interviewed for this study nearly all saw an immense value in patient experience feedback, and most believed it should receive a high priority at a strategic and Trust board level".

However, they "largely seemed powerless to prevent the tsunami of ongoing data collection". They know that "staff find interpretation of data sets difficult or impossible... but there was no strategy in place or forthcoming at any of the three organizations we studied to address this issue".

Parity of esteem - not yet

Evidence of worsening quality comes from the Care Quality Commission's newly released patient survey for community mental health services, which shows that patient experience has deteriorated across several areas.

In some areas, this represents a continued negative trend, with a consistent decline in results since 2014. In other areas, the results declined significantly this year, having remained relatively stable between 2014 and 2017.

The news is not all bad. There has been a steady improvement in people's awareness of who to contact out of office hours when having a crisis. And better than average experiences were identified for people diagnosed with a psychotic disorder. Against this, though: - Only 43% of respondents had 'definitely' seen NHS mental health services enough for their needs in the previous 12 months.- The percentage of respondents who "definitely" felt that staff understood how their mental health affects other areas of their life had decreased.- People's experiences of how services plan their care are at their lowest point since 2014.

As far as overall experience is concerned, 71% of respondents felt they were "always" treated with respect and dignity by NHS mental health services. This compares with 82% of adult inpatients in acute hospitals (physical health), who felt they were "always" treated with respect and dignity. It seems that "parity of esteem" is still some way off.

Alone in a crowd

Rare diseases are those which affect fewer than 1 in 2,000 people. And while individual diseases might be rare, there are considerable numbers of people within the population as a whole who are living with a rare disease.

Around 80% of rare diseases affect children, and almost half have their onset in childhood - so this Canadian study turns its attention to the experiences of parents whose child has a rare disease.

The study found that parents shared common experiences of navigating the healthcare system - despite the uniqueness of their children's diagnoses. Main themes were "the diagnostic journey", "seeking and accessing services", and "peer support".

For diagnosis, parents described a complicated experience, with numerous doctors' appointments and persistence in their pursuit of a definitive diagnosis for their child. But receiving a label or diagnosis was not the same as receiving help. Many parents felt that they were left with the responsibility of figuring out their next steps, and adopting the role of care coordinator. Given the complex health needs of their children, most families had interactions with many specialists and health services. A common experience was the lack of formal care coordination and communication between healthcare providers.

Parents also spoke about the barriers they faced in accessing services. Sometimes the processes they had to follow to access services were challenging to understand and could create contentious relationships with healthcare providers. Accessing services also led to employment changes for some parents. One reported missing months of work and leaving the workforce due to her child's hospitalisations.

Peer support from other parents of children with rare diseases emerged as a key resource. Even though most children had unique diagnoses, parents found that their experiences of navigation and coordination of healthcare services were similar. Social media was considered a good way to connect because their children's intense care needs often meant parents were not able to attend groups in person.

The paper concludes that "the broader research mandate about rare diseases must move beyond diagnostics and treatment to address the very real and pressing issues that arise from the patient - and by extension family - experience in navigating healthcare systems".

The feedback avalanche

What does good patient experience look like?

That question is easily answered by staff who work face to face with patients. Smiles, thank you cards and boxes of chocolates are visible signs that a patient's experience has been good. But at the organisational level, it can be much harder to understand how patients are experiencing service quality.

We tackled this topic for an editorial in the latest issue of the Journal of Clinical Nursing. With colleagues from the universities of Exeter and Brighton, we tracked some of the policy drivers for patient experience work, and looked at how healthcare organisations have tried to turn policies into practice.

It is clear that serious efforts are being made to hear the patient voice. But we take the view that in seeking to meet the call that 'something must be done' the system has created an avalanche of patient feedback. The result is information overload, with patient experience staff sometimes struggling to keep up with the flow of data.

In fact, oversupply of information need not be a problem. Clinicians have management information systems that help them make sense of complex data. They have clinical databases that make research accessible and searchable, and they can look up clinical guidelines that help them remember key practice points.

The material on patient experience, however, has not been so well organised.

We think that the NHS needs to systematise its efforts, focusing on how things work from the patient's viewpoint, rather than validating existing practice through a ticking of boxes.

A rethink is needed on how we tap into patient experience. A rethink that takes account of these challenges and acknowledges the possibility of unpalatable answers which may disturb, or at least question, the current balance of power between organisations, professionals and patients.

This is not a shot in the dark. There are encouraging omens. And we all have a part to play in this agenda.

Health care can't be patient centred without evidence

We're delighted to see interest from Canada in the work of the Patient Experience Library. Canada has a thriving patient engagement/advocacy culture, which we have flagged up in previous newsletters, and via comment pieces in our quarterly Patient Experience magazine.

So we are pleased to see one of our own comment pieces published on the influential Policy Options website. Miles Sibley, a Director of the Patient Experience Library, makes the point that if the NHS wants to be patient-centred, it has to understand patient experience. And that means it has to work from the evidence.

That may sound obvious. But it begs the question, "where is the evidence held?" The answer is that patient experience evidence is published across hundreds of different organisational websites, all of which are designed and structured differently, and some of which are not well maintained.

Even dedicated patient experience teams can find it hard to keep up - and the problem is that if you can't find the evidence, you can't act on it.

We built the Patient Experience Library to tackle that problem, starting with the rationale that if clinical research databases are feasible, why not a patient experience research database?

We're pleased that national NHS organisations are using the library. But we really want to see it opened up to patient experience teams, patient representatives, local Healthwatches - in fact, anybody with an interest in patient experience and patient/public involvement.

We'll keep working on that - and will aim to make the point at a meeting with Secretary of State Matt Hancock soon. In the meantime, our message to colleagues in Canada and elsewhere around the globe is simple: if clinicians can have comprehensive evidence bases to work from, so can patient experience workers.

Emotional feedback

The latest edition of our Patient Experience magazine opened with the observation that one of the biggest make-or-break factors for quality of patient experience is "communication". With impressive timing, NHS England have promptly released a new guide on how to seek feedback in distressing or highly emotional situations.

The document adds to the Bite-Size Guides series , some of which we have featured previously, and all of which provide useful summaries for busy practitioners.

The guide considers the ethics of asking people for feedback when they are very upset - for example after a bereavement. Might questioning them at such a time be intrusive, or make them feel worse? Conversely, it considers the ethics of not helping people to talk about their experiences - of effectively excluding them from a process that should be open to all.

They may be no simple answers to these questions. But the guide considers matters such as timing, methods, and people's capacity to discuss their experiences - especially if they are both unwell and distressed.

As always, it is crucial not to treat feedback as a tick-box exercise. The guide makes the important point that feedback "is a way of creating a humanising atmosphere and improving relationships between everyone involved".

Conversations with people who are angry or upset may not be comfortable. But we are reminded that people "feel that sharing their experience can help improve the experience for others". And in some situations, "the opportunity to provide feedback can be a way of intervening before frustrations boil over, or can form part of the healing process".

Just one thing after another

It is well known that one of the big challenges to our healthcare system is the increasing number of people living with long term health conditions. This is one of the key factors propelling health and social care towards greater integration of services, as well as initiatives designed to help people "self-manage" their own health in their own homes and communities.

So this report from the Taskforce on Multiple Conditions is a welcome addition to the literature - not least because it takes an ethnographic approach, as opposed to exploring clinical perspectives and interventions.

The report's key question: "What is it really like to live with several long-term conditions that can be managed but not cured?" is explored through ten in-depth interviews. The interviewees represent a range of demographics and locations across England.

The authors make the point that "many people... seeking support with one condition are also living with other conditions and too often experience siloed, condition-based, care and support". It also notes that "The point at which each person goes from one to many health conditions... seems to track issues of deprivation, culture, lifestyle and place".

The report concludes that three basic principles - mobility, active involvement in care planning, and regular goal-setting - are fundamental to helping people with multiple long-term conditions to achieve a good quality of life.

"Patient experience" work often concerns itself with people's access to, and satisfaction with, services. This report, by contrast, starts with the person rather than the service(s) they use. The result is a person-centred view of patient experience - and a useful set of insights.

Across health and care services, one of the biggest make-or-break factors for quality of patient experience is "communication".

That can mean written or verbal communication. It can mean the use of medical jargon, as against language patients can understand. It can mean communicating in accessible ways - sign language or easy-read for example.

But sometimes, it can be about sensitivity and tone of voice. And it can be as much about what is not said as what is.

Our contributors to the autumn edition of Patient Experience Quarterly all remind us of the importance of good communication.

Vidhya Alakeson, bringing her elderly father home from hospital, could have done with help to understand what his care needs at home were going to be, and help to understand the roles and responsibilities of multiple health professionals involved in his post-discharge care.

Joanne Hughes, a bereaved parent, asks for a kinder and more healing dialogue with the health professionals who could have helped her to understand why her daughter died.

Julia Jones describes the experience of having to stand up for her mother against health professionals who seemed to be following rigid procedures rather than getting to know their patient.

Evidence on patient experience comes both from personal testimony and from formal studies. So our magazine also features our top picks from recent surveys and research, with summaries of learning points, and links to the original documents.

We're always keen to hear from our readers, so if you know of a standout report that we should be featuring, or if you want to submit a comment piece, get in touch! info@patientlibrary.net

Speaking up in the ICU

Intensive care units (ICUs) are places where "stakes are high and time is compressed" according to this study from America. So the ability of patients and families to voice concerns may be of more pressing importance than in other care settings.

The paper opens by rehearsing some familiar arguments about why people need to feel comfortable in asking questions or raising concerns. These include understanding the risks and benefits of care, and consenting to treatment on the basis of informed choice. Safety is a factor, as "families - vigilant stakeholders - may be the first to detect a change in a patient's clinical status". And families can help to ensure continuity of care as medical team members come and go.

All of this "may be particularly important in the intensive care unit , which provides high-intensity, high-acuity, error-prone and preference-sensitive care". But, say the authors, "voicing concerns in the ICU can be problematic for patients and families: the physical environment may be perceived as strange or dangerous, patients are at high risk of death, power asymmetries are extreme, multiple clinicians and teams are involved, and the complexity of care may be overwhelming".

The study appears to be the first to address family comfort with speaking up in the ICU. And worryingly, it found that 50%-70% of patients and families "expressed hesitancy to voice concerns in real time about some common care situations with safety implications, including a possible mistake or mismatched goals related to aggressiveness of care".

The authors sort patient-perceived barriers to speaking up into three types: mechanistic (how to do it), contextual (team is too busy) and cultural (fear of being a troublemaker).

Their conclusion is that "Educational strategies should include both encouraging and supporting patients and families to voice concerns with clear steps and a genuine invitation, and preparing clinicians to respond meaningfully when patients speak up".

Power, ceremonies and the unconscious mind

All users of health services know the experience of sitting in a waiting area. And many know the experience of sitting there long after your appointment time has passed, wondering when you might be seen. NHS England's GP Patient Survey, for example, consistently shows 1 in 3 patients reporting waits of more than fifteen minutes beyond their appointment time.

This week, we have dug back into our archive for a 2012 paper that asks why healthcare bookings so frequently overrun.

John Launer, the paper's author, is not convinced by references to staff capacity, unpredictable patient needs and so on. "Consultation lengths and emergencies do vary, but they have a statistical pattern... so you can adjust your booking system accordingly; it's just that most institutions don't bother to do so."

Furthermore, "Some doctors regularly finish an hour or two late, yet their patients are still stacked up for appointments every session without the remotest chance they will ever be seen on time".

For Launer, keeping patients waiting is not about practicalities, but power. Clinics are run in such as way as to "send clear signals to patients that we are the people who make and apply the rules, and they are the ones who are obliged to comply".

Power is reinforced by ceremony and ritual - for example, "when doctors emerge every few minutes from consulting rooms to retrieve a set of notes and then vanish again, it has a close resemblance to a Greek orthodox priest disappearing behind the icon screen".

Exploring unconscious organisational culture, Launer notes that workplaces can feature controlling behaviour and even destructive tendencies. Waiting rooms can therefore be places "where we have licence to treat patients badly, and to make up credible excuses for doing so".

Healthy healthcare organisations are ones where professionals "behave more compassionately towards patients, and indeed towards each other". They can then "feel free to start changing dysfunctional systems that seemed unchallengeable, or just part of the natural order of things".

For Launer, "An improvement in waiting times would be a good place to start".

Rethinking engagement

Traditional methods of gathering patient feedback are "stuck in child-parent mode", according to this thought-provoking editorial from the British Journal of Psychiatry Bulletin. The author, David Gilbert, writes from his experiences as both professional and patient, and calls for a fresh approach to patient engagement.

For Gilbert, "Patient and public engagement, as traditionally conceived, buffers power by distancing patients from decision-making".

With conventional patient feedback, people are invited to "fill in questionnaires, attend focus groups or tell their stories... The focus is what happened to them in the past, mostly about their experience of services (rather than living with a condition, or about their lives beyond the institutional scope of interest)".

Subsequently, "the meaning of their data is left to professionals to assess... based on... institutionalised thinking (often what is seen as feasible rather than necessary)".

Gilbert makes the important point that "Patients are not permitted to eyeball the data or bring their own interpretations to it". At the local level, patient access to feedback data may vary between Trusts and CCGs. But at the national level, Gilbert's observation chimes with our own view that feedback data is held by so many different organisations in so many places and so many varying formats that even dedicated patient experience staff can struggle to keep up with it all. For patients and public, the task is nigh on impossible.

The editorial goes on to explore the "adolescent-parent" relationship engendered by committee processes that invite patient representatives but then marginalise their contributions. And it covers much extra ground besides, including a case study of a real-life exercise in rethinking engagement via the Sussex Musculoskeletal (MSK) Partnership.

A letter from the doctor

In an important development for person-centred care, the Academy of Medical Royal Colleges is encouraging doctors to write outpatient letters directly to patients, copying in the GP. This reverses the traditional approach of writing to GPs and (sometimes) copying in the patient.

The move matters for two key reasons.

Firstly, it shifts the power balance. Patients become primary recipients of information about themselves. They are no longer positioned as bystanders in their own care, watching passively while professionals talk to one another above their heads.

Secondly, GPs benefit as well. The Academy states that "Doctors who have adopted the practice say their communication style has become more patient-centred. GPs find the letters easier to understand and spend less time interpreting the contents for the patient".

The new guidance does not come out of the blue. It reflects statements about patients' rights in the NHS Constitution, and GMC guidance on good medical practice. And while it is based in policy, the Academy recognises that it cannot take implementation of the guidance for granted. It calls on "hospital trusts and clinical teams to support this initiative and provide help and training to all who need it".

Addressing letters to patients first and GPs second may seem like a very small step. It is certainly one that should be achievable at little or no extra cost. But culturally, it marks a significant shift. This is an important piece of guidance that should be required reading for Trust Boards.

Patient experience and hot cakes

Our Patient Experience in England report has been going like hot cakes from our website - not that we can claim much of the credit!

The report's content is assembled from some excellent work that has been produced over the last twelve months via national patient surveys, academic research, think tanks and official inquiries. All we have done is collate and curate it. The result is a compelling overview of the state of patient experience and patient/public involvement in England.

The report itself is just the very tip of the iceberg of patient experience evidence. We have added thousands of reports to the library over the last year, and continue to add more every week.

A year ago, when we published our first such report, we said that we had three ambitions:

1. To offer a single point of knowledge on patient experience and patient/public involvement. Much of the evidence resides in the realms of "grey literature", and it has been far too difficult for people to track it down. We want to make it much easier to find.

2. To preserve the literature. Over a forty year period, Community Health Councils, PPIFs, LINks and now Healthwatch have made valuable contributions to the collective intelligence on patient experience. But there has been no archive, so vital knowledge has been lost. Without access to their own history, health services risk repeating the same mistakes. We want to help them learn from past experience.

3. To give patient experience leads parity with clinicians. Happily, clinicians have open access to professional databases to guide their practice and professional development. Unhappily, patient experience leads don't. We want to help even up the professional playing field.

Those three ambitions remain true, and we're looking forward to working through the autumn with the people and organisations who have inspired and encouraged us. Some of those are listed on page 3 of the report, and we'd like once again to offer them our thanks.

Patient Experience in England

NHS strategies, from the Five Year Forward View down, state that an understanding of patient experience is central to development of "person-centred" services.

But our 2018 Patient Experience in England report shows that staff teams across the NHS continue to struggle to make sense of patient feedback.

The report draws on surveys and research carried out over the last twelve months by bodies including the Care Quality Commission, NHS England, and academic institutions. It shows that:
- Patient feedback could be used to drive improvement - but enthusiasm for its collection is not matched by the capacity to turn data into insight.
- Phrases like "person-centred" and "patient involvement" are poorly defined, leading to unhelpful simplifications and difficulty in evaluating different approaches.
- There are clear links between staff experience and patient experience. For example, when patient loads are high, 65% of nurses are unable to comfort or talk with their patients.

The report covers other areas such as the Gosport Inquiry and "learning from deaths" work over the last year. And it looks to the future, with consideration of how machine learning might help the NHS to keep track of the large volumes of patient feedback now coming in via social media.

The evidential value of lay knowledge

"They seem to need a disaster to change regulations, rather than evidence".

This 2013 quote comes from the secretary to the Parliamentary Fire Safety and Rescue Group, after government had ignored the Group's recommendations on fire safety in tall buildings. Four years later, Grenfell Tower burnt down.

Warnings about the specific risks at Grenfell Tower had come from residents and from the Grenfell Action Group. But their "lay knowledge" of the building's attributes was not acted on.

This scenario would be familiar to patients and relatives at Mid Staffordshire, Morecambe Bay, Southern Health or Gosport. In each of those cases, evidence - in the form of personal observation, feedback and complaint - was ignored until it was too late.

Our featured report this week is a short paper which considers the question of lay knowledge, and the extent to which it is recognised - even permitted - by professionals.

The authors trace the value of people's experiential knowledge all the way back to Aristotle, who described it as "practical wisdom". But they say that lay knowledge can be marginalised in policy and practice.

Sometimes this is because it is seen as "oppositional discourse", of a "political nature". It can also be because "the evidence movement remains obsessed with a hierarchy in which quantitative research-based knowledge reigns supreme".

This means that "Knowledge... can be used to... exercise discursive power in ways that privilege some definitions of health and social problems and marginalize others".

The opinion of the authors, however, is that, "Like all evidence, the 'trustworthiness' of experiential knowledge should be assessed... but it should not be ignored."

GP patients move online

The 2018 GP Patient Survey offers some good news, with generally high levels of satisfaction at the NHS's front line of care. 93% of patients felt involved in decisions about their care and treatment. 87% felt their healthcare professional was good at treating them. And of everyone who wanted a same day appointment, 66% got one.

The survey method has changed this year, which means that comparison with previous years' results is problematic for some questions. So we looked at patients' online access to some aspects of GP services, but had to take previous years' results as a general contextual guide rather than a statistically reliable result.

With that caveat, it would appear that fewer people are booking appointments by phone (78% as opposed to 86% in 2017). But more are booking online (10%, against 9% in 2017 and 7% in 2016).

Growing numbers are also aware that they can access medical records online. In 2016, just 6% of patients knew this. In 2017, it was up to 9%, and this year, the figure has risen to 13%.

For repeat prescriptions, there is a similar trend. 14% of respondents had used online services in the last 12 months to order repeat prescriptions, up from 12% in 2017 and 11% in 2016.

Again, changes in the survey method mean that statisticians cannot be 100% reliant on a comparison of this year's results with those from previous years. But for practical purposes, GP practices can probably take it as read that more patients are looking for the convenience of online access, and that a good digital offer will contribute to a better patient experience.

Patients or consumers?

There is a perpetual debate in the world of patient experience and patient/public involvement about how to describe anybody who is not a health professional. The terms "patients", "service users" and "consumers" are all used - with varying degrees of comfort or conflict.

This report from the Beryl Institute sheds interesting light on the matter. They looked at "Consumer Perspectives on Patient Experience" (possibly hedging their bets with that title) and found that for most people, "patient experience" matters more than "consumer experience".

The report states that "Most people... would not suggest that individuals in healthcare facilities are simply customers in the traditional sense of the word". But it goes on to say that "While it is often suggested that healthcare is not the hospitality business or primarily a retail environment, those leading healthcare would be naive to think they are not being compared to those other experiences people are having". In other words, in the commercial sphere, people - as customers - have come to expect convenience, responsiveness and personalisation. In the healthcare sphere people - as patients - may well have similar expectations.

In spite of this, when people were asked "Why is having a good patient experience important to you?", the top three answers all touched on physical needs and how patient experience contributes to healing and health outcomes. By contrast, the bottom three answers were all about customer-focused items such as time and money.

The authors conclude that "while people do acknowledge that to some extent in healthcare it is about being a customer, their health and their humanity are of greater importance". Indeed, "experience is not about just satisfaction, but the real outcomes people hope for in their healthcare encounters. [The reason] why experience is important to consumers is that it's first about their own health".

One further point worth noting is that 91% of survey respondents said that patient experience was "very" or "extremely" important to them. So patient experience is "not just an idea at the softer edges of healthcare, but rather it sits at its heart and has significant impact and serious implications for how healthcare is led into the future".

Living with and beyond cancer

91% of respondents said that they were given the name of a Clinical Nurse Specialist who would support them through their treatment. And 86% said that it had been 'quite easy' or 'very easy' to contact their Clinical Nurse Specialist.

Alongside that, 89% of respondents said that they were treated with respect and dignity in hospital, and 79% said they were definitely involved as much as they wanted to be in decisions about their care and treatment.

As always, it is worth comparing the survey's findings with patient feedback coming from other sources.

We revisited the recent CQC Adult Inpatient Survey, which reported that a quarter (25%) of patients thought their family (or someone else close to them) were not given all the information they needed to care for them after leaving hospital. That means that three quarters (75%) did feel adequately informed. But in the cancer survey, only 59% of respondents said that the doctors or nurses definitely gave their family or someone close to them all the information they needed to help care for them at home.

Additionally, the Adult Inpatient Survey found that less than two-thirds of patients (62%) left hospital with written information telling them how to look after themselves post discharge. For the cancer survey, patients were asked if they had a written care plan, but found that only one third (35%) said that they had been given one.

Since NHS strategies stress the importance of "self-management" for people with long term conditions (including living with and beyond cancer) the issue of information-giving is crucial. Differences in the way questions are asked may mean that the Cancer Patient Experience Survey and Adult Inpatient Survey are not directly comparable. But the similarities are striking, and taken together, the surveys seem to be pointing to an area that is ripe for improvement.

This week, we have dug back into our archive to revisit the issue via a conference presentation by the always excellent Prof. Trish Greehalgh. Using the 2014 Ebola crisis as a case study, Greenhalgh shows how stories can use numbers, and numbers can tell stories.

So the Ebola story can be told from the point of view of an orphaned child, to make the case for better support for survivors of all ages.

It can also be told from the point of view of front-line medics and aid workers, to make the case for more emergency aid.

There is another point of view - the story about development of treatments and vaccines. This version can be rolled out to make the case for more medical research.

These stories can be told by real people - the child, the aid worker, the researcher. If need be, their stories can be reinforced with statistics on numbers of orphans, the scale of the emergency response, the cost of developing vaccines and so on.

Alternatively, the statistics can be presented on their own - as objective fact, coupled with sober social, economic or medical analysis. But even so, the numbers are being used to tell a story.

Coming back to patient experience, the point is that stories and statistics are always being pressed into the service of a particular narrative.

We can test the veracity of both patient stories and statistics. We can look at whether stories and statistics complement or contradict one another. But we should never assume that one form of evidence is always, and inevitably, better than the other.

How PPI changes professionals

People with an interest in patient and public involvement (PPI) spend a lot of time talking about definitions.

There is, for example, the question of whether members of the public should be described as "patients", "service users" or "consumers". Another question is whether they are "involved", "engaged" or "participating". Deeper debate considers whether people are "co-producers", "co-creators", or simply "experts by experience".

What all of these debates have in common is that they reflect a discussion among health professionals about the status of patients.

Language reveals culture. And the debate about how to describe PPI reveals a culture in which power is firmly held by health professionals. It is about how those who hold power choose to define the terms on which patients and public will be invited to the table.

Our featured report this week makes the often overlooked point that "measures to strengthen the position of service users not only change the position of the users, they also alter the position of the professionals involved". The paper examines different types of involvement, and their implications for the positioning of professionals.

So efforts to encourage self-management of long term conditions may be framed as empowering patients through self-determination and participation in decisions about their own treatment and care. This positions health professionals as educators, advisers and supporters.

Efforts to encourage sharing of lived experience can move professionals into a different position. In professionally-led groups, they can be seen as facilitators. In self-help groups, they may have no role at all.

Finally, in efforts to improve services through awareness of user perspectives, the service users may take the role of educators, while professionals become positioned as learners.

Health professionals managing PPI activities will - rightly - continue to debate the nature of public involvement. But they should not assume that their own role and purpose runs unchangingly through different types of engagement. Whether they know it or not, the very act of engagement changes their own position and status as much as that of patients.

What actually is peer support?

Read any NHS strategy and sooner or later you'll come across a reference to the fact that more and more people are living with long term health conditions. The favoured responses involve "self-management" - enabling people to look after themselves by, for example, monitoring and medicating their condition.

Children with long-term conditions will get help from parents and carers. But at school and in friendship circles, they may also look for "peer support".

This study asked pre-adolescent children with Type 1 diabetes what peer support actually meant to them.

Virtually all children described having a small number of close friends who were interested in learning about, and helping with, their diabetes. These friends provided support in three overlapping ways.

"Monitors and prompters" offered reminders of diabetes-related routines (eg blood glucose self-monitoring or administering insulin), for example on occasions when the diabetic child became so engrossed in activities that they lost awareness of time.

"Helpers" offered practical support - for example, by alerting adult caregivers when a friend needed assistance to manage hypoglycaemia.

"Normalizers" might make adaptations to their own lives so that friends with diabetes need not compromise self-management activities to fit in. One example was a girl whose friends delayed having lunch at school until she had completed self-management tasks so they could eat together.

Interestingly, the children interviewed were ambivalent about meeting other children with type 1 diabetes at organized groups or events. Some children speculated that speaking to peers with diabetes might help reduce social isolation, but several cast doubt on whether such encounters would lead to lasting and supportive relationships. One girl said that she would prefer to develop friendships of her own volition rather than as a result of being brought together on the basis of a shared disease status.

Advocate me

You probably know a powerful patient advocate. The sort of person who seems to have boundless energy, expert knowledge, and an ability to tell it like it is. But what happens when experts by experience have their own moments of vulnerability?

In the summer edition of our quarterly magazine, Sue Robins talks of her experience of moving from patient advocate to cancer patient. Her account is a powerful illustration of how independence and assertiveness can dry up in the face of illness.

Patricia Cantley tackles similar themes. Her parents had to summon up their courage to ask questions about their son's care - fearing, among other things, that any complaint might affect their daughter's prospects as a medical student.

We have to remember how hard it can be for patients and relatives to say what matters to them. The people who are actually voicing concerns may just be the tip of the iceberg.

Our third commentator, Martin Taylor, has Parkinson's Disease. He is one of the growing number of people living with long term health conditions. It is important that their experiences are understood, which is why many charities and patients' groups run awareness raising campaigns. But do such campaigns work? Martin questions their effectiveness, and suggests a different approach.

The magazine carries our usual top picks from the evidence base on patient experience and patient/public involvement - and last but not least, our NHS@70 gift to our readers is a specially commissioned set of patient experience posters.

Gosport: An end to anecdote.

Gosport must - surely - be the point at which dismissal of patient feedback as "anecdote" finally comes to an end.

NHS culture is much better than it used to be. Patients are now encouraged to give feedback - and complaints, compliments and concerns are seen by the best providers as learning opportunities. But in a science-driven system, there is a lingering sense that "hard" evidence - statistically based - is more reliable than the "soft" stuff of patient stories.

We cannot go on with this dangerous and damaging myth.

A 2015 report from Dr. Foster explored the uses and abuses of performance data in healthcare. It found plenty of ways to manipulate statistics, including bullying of staff, "gaming" waiting time and mortality data, distorting patient pathways to meet treatment targets, and arguing about data quality in order to divert attention from poor care.

At Mid Staffordshire, the Healthcare Commission (predecessor to the CQC) followed rigorous inspection criteria and gave the Trust a clean bill of health. The Trust's Board were looking at key performance indicators that showed steady progress towards Foundation status. But it was patients and relatives, with no statistics, no performance data, and no research methodology, who got much closer to the truth of what was happening on the wards.

Even when statistics are reliable, professional and organisational fear can put reputation before truth. At Morecambe Bay and Southern Health, and in the Hyponatraemia inquiry, defensiveness, collusion and cover-up were common factors. Patient stories may indeed be unreliable at times. But, sometimes, the same can apply to professionals' stories.

We need to end the reverence for statistical evidence, and accept that it can, sometimes, be flawed. And we need to stop seeing patient testimony as "soft" and acknowledge that it can, sometimes, provide better insight than the numbers.

The plain fact is that qualitative and quantitative evidence, taken together, give us the best chance of getting an all-round understanding of how well our healthcare systems work for patients.

For too long, patient feedback has been described as "anecdotal evidence". After Gosport, we need to recognise that it is, simply, evidence.

Adult inpatients: Problems persist.

Last week saw publication of the latest CQC national patient survey - this one providing fresh evidence on the experiences of adult inpatients.

We now have a nearly ten-year cycle of these surveys, enabling us to start getting a clear picture of patient experience trends over time. Encouragingly, there have been consistent improvements for how well doctors and nurses care for patients. 78% of patients said they "always" had confidence in nurses this year, compared with 72% in 2009. And fewer patients now say that doctors had spoken in front of them "as if they weren't there" (23% compared with 29% in 2009).

Hospital discharge, however, remains one of the weakest areas of patient experience for adult inpatients. 19% of respondents thought hospital staff did not take their family or home situation in to account when planning their discharge, while a quarter (25%) of patients thought their family (or someone else close to them) were not given all the information they needed to care for them after leaving hospital. Less than two-thirds of patients (62%) left hospital with written information telling them how to look after themselves post discharge, a figure which has deteriorated since 2013 (67%).

The problem is not just with hospital staff. 17% of survey respondents said they left hospital not knowing what would happen "next" with their care, and 22% said they did not receive enough help from health or social care professionals to help recovery or to manage their conditions.

These kinds of issues have been repeatedly highlighted in local Healthwatch reports, going as far back as 2013. If patient experience of hospital discharge remains poor, it is not for want of evidence.

Another persistent feature of the CQC patient surveys is that inpatients with a pre-existing mental health condition report a poorer experience of care across most areas of the NHS patient experience framework; information sharing, respect and dignity, coordination of care, confidence and trust, respect for patient centred needs and values, and perceptions of overall experience of care. We have highlighted this previously - and again, it is troubling to see the evidence mounting up but the problems remaining unresolved.

Confronting Dr Robot

We have previously looked at ways in which artificial intelligence (AI) and machine learning might affect healthcare. Now a new report from Nesta adds to the debate.

According to the authors, AI could put patients more in control. But, they say, "there's a risk that the public could experience it more as a barrier than an open door, blocking access to care, offering opaque advice and dehumanising healthcare in every sense".

They say that "today's AI is narrow and not capable of the holistic thinking and complex judgement required for many clinical tasks". For them, "the path towards AI replacing humans is not solely determined by technical capability. Technology implementation will need to address trust, accountability and similar factors".

The report calls for a "people powered" AI for healthcare, based on principles of control, simplicity, dialogue, equity and accountability. These, it says, are "principles that apply to any form of healthcare that aims to be humane and person-centred". However, they "are not presently being applied to the design, development and implementation of AI".

The report recommends that "Policymakers should set rules for AI and ownership of public data that ensure the public gets not only value for any data it decides to share, and privacy elsewhere, but also AI products that deliver maximum public benefit".

Power to the people

The Make Birth Better campaign is raising awareness of birth trauma, and calling for changes to maternity services. It is part of a long and proud history of women campaigning for better births.

Importantly, maternity campaigners have not just focussed on the practicalities of childbirth. They have significantly changed the culture of the medical profession. Concepts of choice and control, and the idea of partnership between patients and professionals are now part of the language of the NHS. But they stem, in large part, from the activism of women motivated by the desire for better experiences through pregnancy and childbirth.

Our guest blog on the Make Birth Better site makes the case for a comprehensive evidence base on women's maternity experiences.

All the work of the Patient Experience Library is based on an understanding that in healthcare, knowledge is power. Individually, women seeking better births can rely on personal experience and personal assertiveness. But women together - over time and across communities - need to be able to draw on collective experience and shared knowledge. And for that, they need access to the evidence.

The Library contains over 40,000 documents on patient experience and patient/public involvement. Several thousand of those relate to maternity. We want those to be freely available to patients, public, activists, researchers and, of course, health professionals.

We remain hopeful that NHS England will at some point see the value of the resource, and will want to support our efforts. But in the meantime, we're open to discussions with maternity campaigners about how to mobilise the evidence, and put more power into the hands of women and their birth partners.

A raw deal for children

"Even taking into account the significant expansion in children's mental health services, workforce constraints mean that by 2020/21 we only plan on meeting the needs of a third of children with diagnosable mental health conditions".

This statement comes from the foreword to Lord Carter's review of unwarranted variations in mental health services and community health services.

The review considers a range of productivity and efficiency issues across various mental health and community health services. But let's stay with those children with diagnosable mental health conditions.

Back in 2016, the Five Year Forward View for Mental Health said that "too many people have received no help at all, leading to hundreds of thousands of lives put on hold or ruined, and thousands of tragic and unnecessary deaths". It spoke of "a real desire to shift towards prevention". But that desire sounds hollow in the light of Carter's revelation that two years from now, two thirds of children who may need treatment will have to go without.

Children who do get treatment for mental illness might be considered lucky - except for the fact that their experience, as patients, is consistently poor.

The Care Quality Commission's most recent Children and Young People's Survey found that patients with a mental health condition, and their parents and carers, reported significantly worse experience for matters including information and communication, transition and continuity, respect for patient-centred values, involvement of family and friends, and awareness of medical history.

At the start of 2017, Prime Minister Theresa May described mental illness as a hidden injustice. We have said before that the injustices are not hidden - they are in plain sight.

Lord Carter's review outlines ways in which productivity and efficiency improvements across mental health and community health services could save the NHS nearly £1 billion by 2020/21. Putting that saving towards better preventative work in children's mental health might be a good way to start addressing the injustices that the Prime Minister is so concerned about.

15 steps for maternity

The consultation document states that "The context in which patient safety incidents occur is extremely important". It says that "By considering the context we are asking what caused an incident, rather than who is to blame".

This is vitally important, given the learning from major failures at Trusts including Mid Staffordshire, Morecambe Bay, and Southern Health. In every case, part of the context for avoidable harm and death was an organisational culture that devalued patient experience and dismissed the concerns of patients and relatives.

So the publication of NHS England's "15 Steps for Maternity" is timely, and welcome. The subtitle, "Quality from the perspective of people who use maternity services" points to its value in enabling the patient voice to be heard alongside regulators and inspectors.

The authors are keen to point out that the 15 Step Challenge is not a performance management tool or an audit. Instead, it aims to build an understanding of how people feel about the care provided, how confidence can be built by positive first impressions, and what might be done to increase levels of confidence as part of continuous improvement.

The challenge is based on a quote from the mother of a child needing frequent hospital admission. Her observation was that, "I can tell what kind of care my daughter is going to get within 15 steps of walking on to the ward". And sure enough, a series of practical guides prompt people taking the challenge to record immediate impressions of a healthcare service - taking in features such as "welcoming", "safe", "clean" and "calm".

Anyone who has read the report of the Francis Inquiry will know that these are powerful pointers towards the underlying wellbeing of staff, systems, and, ultimately, patients.

The 15 Steps Challenge has value in its own right as a means of getting service users' feedback. But it can also offer important clues to that vital question of "context" that underpins health professionals' ability to do their jobs safely and well.

PPI in a digital age

"We live in a digital age" says the opening statement to this report. And sure enough, the NHS is working hard to develop things like electronic patient records and telehealth, propelled by reviews including Wachter and Topol.

This report looks at ways to strengthen the voice of the citizen and patient within the process - not least because "the systems and processes that lead to the adoption of technology tend to marginalise the voice of most patients and the public".

This may be because "projects are nervous about involving the public, and are worried about adverse publicity, particularly in the wake of the Care.data scandal". But the report counters any such perceptions with real-life examples of successful approaches to involving patients and public in digital healthcare initiatives. These include:

Technology for connecting directly with patients - including tools for self diagnosis and self management.

Technology for communicating and engaging with citizens. This includes crowdsourcing techniques and other forms of citizen science.

A series of case studies illustrate how these principles are being applied across the country, and the report is rounded off with a summary of key points of good practice, followed by suggested ways to strengthen patient/public involvement in the development of a digital NHS.

This is a good report that raises some important issues. And, following her own good practice recommendations, the author finishes with a call for interested readers to get in touch, to share ideas and continue the discussion.

I could not survive another day

It is good to see NHS England's recent announcement of new funding for community perinatal mental health services. These will allow pregnant women and new mothers with mental health difficulties to access specialist services in every part of the country by April 2019.

We hope that the new services will be evidence-based - not just in terms of clinical need and treatments, but also in terms of understanding women's experiences through pregnancy and beyond.

So this week, our featured report is one that came out a few years ago but which is still highly relevant.

Hyperemesis Gravidarum (HG) is a severe complication of pregnancy associated with extreme nausea and vomiting. Other symptoms include headaches, heightened and warped sense of smell and extreme fatigue.

In addition to the physical complications HG can lead to depression and social isolation as well as financial and relationship problems, and women can feel they are less effective parents due to the condition. These complications in turn can lead to Post Traumatic Stress Disorder. Research indicates that around 10% (and possibly as many as 20%) of sufferers terminate otherwise wanted pregnancies for the condition.

This report describes the experiences of women who had ended pregnancies while suffering HG. 95% described their symptoms as "intolerable", and 84% said they would have wanted to continue with the pregnancy if they had not been suffering HG.

Shockingly, the researchers found that 47% of women did not receive treatment for HG. Of these, 40% requested treatment but were denied it, and the others did not ask for treatment and were not offered any. A quarter of women who were not prescribed medication reported that it was because their doctor said it would harm the foetus or there were no medications suitable for pregnancy.

The authors conclude that women are terminating wanted pregnancies because they are being denied antiemetic treatment. They state that women who have terminated due to HG carry a significant burden of guilt, remorse and often anger upon finding out subsequently that treatments are, in fact, available.

Hyperemesis Gravidarum is a physical health condition. But it is one which can have profound consequences for women's mental wellbeing - especially if the symptoms and medications are poorly understood by professionals.

As new community perinatal mental health services are rolled out across England, it is vital that they help to improve understanding of HG. That means listening to women's experiences, and recognising that better physical and mental health for HG sufferers may depend, as much as anything, on better professional responses.

Hospital visiting Canadian style

It has been heartening to see calls for an overhaul of hospital visiting rules from Jane Cummings, Chief Nursing Officer for England. With the 70th anniversary of the NHS coming up, she thinks it's a good time to for hospitals to sign up to John's Campaign (for the right of people with dementia to be supported by their family carers) and pledge their welcome to carers.

According to Cummings, "A flexible approach to embracing the presence of carers has led to improving the overall experience of care, changing the atmosphere in wards and services, and helping to make best use of current resources. It has also led to better communication, fewer complaints, reduction in falls, violence, delirium, length of stay, improvement in hydration and nutrition, acceptance of therapy and medication, generally improved well-being and maintenance of function, complementing the work of the #endpjparalysis and the last 1000 days programme."

Over in Canada, the debate about hospital visiting has been going on for a while. Our featured report this week summarises the deliberations of a Better Together Policy Roundtable on the topic of "family presence".

The family presence approach aims to change the concept of families as "visitors" to families as partners in care in hospitals. It enables patients to designate a family member or loved one who can remain with them 24/7 and be a part of their care team. Families can be present during many aspects of the healthcare experience, including rounds, procedures and transitions.

The roundtable looked at the evidence supporting family presence, considered the current state of family presence in Canada, set about dismantling the myths and challenges of family presence, and looked at case studies of family presence policies.

It then moved on to equipping participants with knowledge about how to implement family presence policies across their organization or jurisdiction. The report says that "Participants left the second day of the roundtable with clear and actionable steps for beginning the process of adopting family presence policies within their jurisdictions or across their healthcare organizations".

We welcome Jane Cummings' call for a review of hospital visiting restrictions, and her clear support for the John's Campaign principles and pledge. We hope that this is just a first step towards the kinds of family presence approaches that the Canadians are championing.

Better deal for PX staff - more evidence

We'd like to say thank you to everyone who liked, retweeted and commented on our BMJ Opinion piece last week, which called for a better deal for patient experience staff. A key part of our case was that PALS teams and others are swamped by patient feedback from multiple sources, presented in a bewildering variety of formats, and published across far too many different websites.

By happy coincidence, we spotted this paper last week, from a team of academics who have been looking at the "usefulness and use" of patient surveys.

There is so much good stuff in this paper that it is hard to know how to summarise it. Perhaps the best way would be via these direct quotes:

"The value of data for organizational quality improvement is not commensurate to the volume of data the system supplies. This misalignment is... in many ways, the consequence of national survey programs being set up to satisfy a national agenda rather than being designed with respect to local circumstances."

"... gleaning information from experience data requires the same analytical capability as interpreting clinical data; however, that capability is often unavailable. Staff across health systems consider patient feedback to be valuable but have neither the time nor the expertise to use it...".

"The paradigm regarding patient experience feedback is heavily rooted in large national initiatives... which are accompanied by a sluggish bureaucracy and political concerns. It is likely that these initiatives are neither capturing, nor producing, what is most useful to the organizations trying to use patient feedback to improve care".

"In order for patient-reported feedback to be an effective improvement tool, and avoid the ethical grey zone around soliciting patient input and not acting on it, feedback programs need to make efforts to facilitate data comprehension and use."

It's not that the national surveys are no good. In fact, they are packed with potentially useful data. Developing that potential, however, means giving patient experience staff the analytical tools they need. We have been doing some work on this and hope to develop some solutions. If you have thoughts on this matter, we'd like to hear them! Please get in touch at info@patientlibrary.net

A better deal for patient experience staff

It is good to see NHS England running this year's Experience of Care week. Right across the country, patient experience teams are joining in with events, case studies, celebrations, and lots of activity on Twitter.

In an NHS that tends to be dominated by news of financial and workforce pressures, it's patient experience staff who remind us that what matters most is how patients experience the care they receive.

Our top message for Experience of Care week is simple: if staff have good experience of care, so do patients. A workforce that is nurtured, developed and supported will have a better chance of giving patients the best possible care.

Patient experience staff are central to this. And they deserve better support.

The NHS draft workforce strategy is bafflingly silent on this. It says that its purpose is "to put staff at the heart of a patient centred service vision". But it says nothing about patient experience staff - the very people who are best placed to help.

Happily, the BMJ is alert to this issue, and keen to hear more. Our opinion piece sets out clear proposals that are easily achievable by NHS England:

- A stronger learning foundation for patient experience work, with a qualification and professional development pathway. - Automatic access for PALS teams to the Patient Experience Library - the UK evidence base on patient experience.- Analytical tools to help staff make sense of the mass of patient survey data that arrives in different formats from different sources.- Acceptance by all Trusts that Heads of Patient Experience should be part of a patient-centred leadership culture.

This is the kind of professional recognition and support that clinicians take for granted. Patient experience staff deserve similar - especially in an NHS that says that "experience of care" matters.

PALS vs robots

It is not easy to make sense of patient experience. Healthcare providers struggle to keep up with multiple datasets coming from CQC inspections, national patient surveys, Healthwatch reports, local compliments and complaints systems and more.

This paper makes the point that "enthusiasm for collecting patient experience data does not guarantee that these data will be used to monitor improvements and assure the quality of care". It goes on to say that "the eagerness for collecting [data] dissipates into confusion as busy staff struggle to transform reams of patient comments into useful information. The inevitable result is that, despite the best efforts of staff, information which patients share in good faith is wasted".

The task has, in recent years, been made even harder by the increasing tendency of patients to bypass formal feedback mechanisms and air their views via Twitter, Facebook and other social media. How are hard-pressed patient experience staff meant to keep up?

The authors consider the role of machine learning in helping providers to track large volumes of patient comments on social media and to "automate the laborious process of analysing the unstructured text".

They note that "The performance of machine learning algorithms is attractive". One system in particular can predict NHS Choices star ratings "with an admirable 97% accuracy".

So is it time to get rid of patient experience staff and use robots instead?

On this point, the authors are cautious. According to them, "Previous research has highlighted the disconnect between the collection of patient feedback, a relatively straightforward endeavour and its subsequent use to drive improvement activity" a far more elusive task".

In other words, computers can collate and sift data, but it takes skilled and experienced staff to work out what really matters, and to spot where the opportunities for service improvement lie.

As the authors themselves acknowledge, computational systems are good - they can excel at some tasks, and improve efficiency in some of the more laborious aspects of data handling. But the job of "distilling 'messy' patient data into clear and actionable insight" is - for the time being, at least - best left to humans.

Patient Experience magazine - Spring 2018

Much of the discussion about patient experience centres on kindness and
compassion. Sometimes, the talk is about dignity and respect. But how often do we think about the dynamics of power?

When the focus shifts from patient experience to patient and public involvement, we need to be especially conscious of the power balance between professionals and people who are sometimes described as "lay representatives". How are people invited to engage, and on what terms? On whose territory do meetings take place? Does professional expertise carry more weight than lived experience?

In the Spring edition of Patient Experience, we have two comment pieces that address these issues - raising questions, and offering pointers to good practice. Our third contributor describes her encounters with a health system that seems
disjointed, unresponsive, even disrespectful. This creates another kind of power imbalance - one that makes a nonsense of aspirational statements in strategy documents.

We also have our usual roundup of recent reports on patient experience and patient/public involvement, including a batch that offer further evidence that the way healthcare staff are treated affects the way that patients are treated. As the
NHS finalises its workforce strategy, this is vital evidence that must be taken into account.

We're always keen to hear from our readers, so if you have news and views for our next edition, get in touch!

Now yet another report, this time from the Parliamentary and Health Service Ombudsman, reinforces the point.

The PHSO's job is to pick up complaints that have not been resolved by the NHS. And sure enough, the report highlights a series of such complaints, arising from serious failings in NHS mental health services. But it also considers how and why mistakes might be made in the care of people with mental illness.

A frank assessment of "The state of mental health provision in the 21st century" pulls no punches. It refers to recent CQC findings of:- unsafe staffing levels- staff on acute wards lacking the skills to anticipate and de-escalate violent situations- information about risk not being available to all staff involved in a patient's care

It goes on to mention a King's Fund report which revealed "a 13% reduction in mental health nurses between 2009 and 2017, with inpatient care losing nearly 25%. Almost 10% of all posts in specialist mental health services in England are vacant."

The effect on patient experience can be seen in the complaints case studies that form the main part of the report. But the PHSO is in no doubt that "workforce challenges" are at the heart of the problem.

"The complaints we have included in this report demonstrate how patient care and safety is jeopardised by these workforce challenges. They show clinical staff ill-equipped with the skills to manage potentially violent situations, being expected to work double shifts leading to exhaustion, and clinicians having to treat conditions they have no experience of. Unless these workforce challenges are addressed it is difficult to see how the transformation of mental health care, envisioned in the Five Year Forward View for Mental Health, can be realised."

This is now the fourth consecutive report to make the links between staff experience and patient experience very clear indeed. As the workforce strategy moves from draft to completion, we hope that senior NHS managers will take note.

Patient surveys: Read the small print

A common feature of patient surveys is some form of ratings system to indicate levels of satisfaction. Patients may be asked to give one to five stars for aspects of the service they have experienced, or to score from 1 ("Very Poor") to 10 ("Excellent").

Patient experience staff assessing the results will of course be delighted to see a sheet with top scores against all the survey questions. But this study, published in the Patient Experience Journal, suggests that the top scoring responses may merit a closer look.

The authors analysed almost two years of in-patient survey data from a large hospital system in the US, and found, puzzlingly, that "a significant percentage of patients provide perfect domain scores only to follow up with negative comments". They wanted to investigate this apparent contradiction and to "understand what patients who provide positive experience scores and negative comments are trying to tell the health care organization".

One finding was that patients sometimes use free text comment boxes on a survey form to raise issues that are not addressed by the actual survey questions. In one example, the survey asked about matters such as controlling pain or meeting emotional needs. But the patients, via their free text comments wanted to raise issues such as support staff and understanding of medications.

A second consideration is that "patients who are highly loyal to an organization may not want to decrease their ratings, based on an understanding that ratings are important to the organization". Giving high ratings while airing problems via the comment boxes may enable patients to express loyalty to the organisation, while simultaneously (and as a kind of quiet aside) suggesting room for improvement.

A further point is that "a patient may see a health domain as being predominantly great, but spoiled by 'one bad apple'". For example, a survey question on "nurses" in general may be rated as excellent, while the comment box reveals a problem with one nurse in particular.

The study contains plenty more interesting detail. But its overall message seems to be that if that if you get a five star survey response, don't rest on your laurels. For real learning, read the small print.

Patient experience, public satisfaction and politics

Many of our featured reports cover patient experience. This week's is different.

Instead of looking at experience of NHS services, this briefing, using data from the British Social Attitudes survey, looks at general public satisfaction with the NHS. As the authors state, "Polling on public attitudes is different, because people tend to focus on wider issues as well as their experience of care when responding. Not everyone responding to a public poll will have used the NHS recently".

So how satisfied are the general public with our health service? The good news is that "the NHS remains a treasured national institution that is a key part of the British national identity. The public is unwavering in its support for the underlying principles of the NHS and consistently prioritises the health service for extra government funding".

The bad news is that "public dissatisfaction with the NHS grew to 29% in 2017" the highest level of dissatisfaction with the NHS since 2007". Further, "Dissatisfaction with the NHS has risen rapidly over the past three years: between 2014" and 2017, the level of dissatisfaction almost doubled".

Analysis of responses to the survey shows that people under the age of 65 report lower levels of satisfaction than those aged 65 and older. And respondents who identify as Black report lower levels of satisfaction than respondents who identify as White. The briefing notes that "Patient experience surveys also find that patients from minority ethnic groups report more negative experiences, and this may be a contributing factor to differences in the satisfaction levels reported in the BSA survey".

The top two reasons for satisfaction were "quality of care" and "free at the point of use". The top two reasons for dissatisfaction were "not enough staff" and "takes too long to get an appointment". There is an interesting mix here of opinions that may stem from patient experience but which could also reflect political viewpoints.

The question of political viewpoints is important. The conclusion to the briefing states that "With an increase over the last few years in the proportion of survey respondents reporting lack of funding as a reason for their dissatisfaction, it seems the public is increasingly aware of the reality of funding pressures that the NHS has experienced". It finishes by saying that "With equally small increases in funding planned over the next few years and NHS performance on key headline measures worsening, it is hard to see the public's satisfaction with the NHS improving in the near future".

Care for staff equals care for patients

Twice in the last couple of months, we have featured reports which show that workforce pressures on NHS staff generally result in poorer experience of care for patients. Those reports (here and here) focussed mainly on staffing levels and workload.

This new report takes evidence from NHS staff experience surveys and considers the extent to which staff experience (good or bad) can be a predictor of good or bad patient experience. It found that "there are some clear and strong associations between staff experience and how satisfied patients are".

As with the other reports, workload was important. "When the pressure is higher, and when staff are less satisfied with the resources and support available, patients clearly notice and have a less satisfactory experience."

However, the report goes beyond quantitative matters such as staffing levels, to look at more qualitative aspects of staff experience. It found that organisational culture matters: "In organisations where employees feel that there are not equal opportunities for career progression or promotion, or when staff experience discrimination, or when staff suffer physical violence at the hands of colleagues, patients are less happy."

The study found that for staff in general, "the ability... to contribute toward improvements at work was not as important". Except, that is, when it comes to black and minority ethnic staff. "...when BME staff thought their role makes a difference to patients, and when they were more able to contribute toward improvements at work, overall patient satisfaction was higher". The authors make the point that "the extent to which an organisation values its minority staff is a good barometer of how well patients are likely to feel cared for".

As the NHS and Public Health England consult on the draft workforce strategy, this series of reports present vital evidence that must be taken into account. They show that workforce issues are not just about staffing levels and skills: organisational culture matters too. They show that a "one size fits all" approach will not work - the NHS workforce, like wider society, comprises diverse groups with varying needs and expectations. And they show that in an NHS that aims to be person centred, the way staff are treated directly affects the way that patients are treated.

Ignoring the alarms

This hard-hitting report from the Parliamentary and Health Service Ombudsman is a must-read for anyone involved in patient experience work and complaints management.

We hear of the needless death of a patient - Averil Hart, who died of anorexia nervosa, aged 19. The PHSO report details "multiple serious departures from the standards of care expected", and "a long series of missed opportunities to recognise her deteriorating condition".

As in so many other cases, what happened next was that grieving relatives suffered the worst possible treatment at the hands of NHS organisations.

The PHSO examined the experience of Mr. Hart (Averil's father) through a prolonged period of enquiry and complaint. They found that "most of the NHS organisations which dealt with Mr Hart's complaint failed to respond to his concerns in a sensitive, transparent and helpful way".

Responses to requests for information "were delayed and appeared evasive, and information he requested was often not provided". Responses to complaints "were equally unsatisfactory, and often appeared defensive or protective of the organisation concerned". There was "a consistent picture of unhelpfulness, lack of transparency, individual defensiveness and organisational self-protection".

The report is entitled "How NHS eating disorder services are failing patients". But it is not just about eating disorder services. Multiple organisations and services were complicit in the poor treatment of the family following Averil's death.

The PHSO says this: "The Cambridgeshire and Peterborough Trust's handling of Mr Hart's complaint was so poor that it was maladministration.""The GP practice's complaint handling was so poor that it was maladministration.""The Norwich Acute Trust's complaint handling was so poor that it was maladministration.""NHS England's approach... was so poor that it was maladministration."

The report finishes with this observation - and warning: "The death of Averil Hart was an avoidable tragedy. Every NHS organisation involved in her care missed significant opportunities to prevent the tragedy unfolding at every stage of her illness from August 2012 to her death on 15 December 2012. The subsequent responses to Averil's family were inadequate and served only to compound their distress. The NHS must learn from these events, for the sake of future patients."

Better experience at end of life

We have often made the point that "patient experience" is not just about what happens to people who are unwell. It is also about how relatives and carers feel about the way that loved ones are being looked after. That is particularly true when it comes to end of life care.

As this new report from Macmillan puts it, "At a time when you are at the mercy of medicine, and of your own body, you can feel extremely disempowered and out of control. And, as a family member, you can feel that everything is happening to you and around you".

The report notes that in July 2016, the Government made a "National Commitment" to improve end of life care across England. This included making sure everyone has access to the right end of life care, regardless of geography, age, diagnosis, background or means.

But the commitment came with no extra funding. Instead, implementation of the commitment was left to local sustainability and transformation partnerships (STPs). Analysis of draft STP plans, however, has shown that 41% had no mention or little detail of how end of life care would be improved.

The report authors state that "there continues to be unacceptable geographic variation and inequality in the end of life care people with cancer receive in their dying months. While some people have choices around where they die, and the chance to spend time with the people who matter to them, others spend their final year in and out of A&E, and have little opportunity to access the care of their choosing".

They go on to say that "Each year in England, an estimated 48,000 people experience poor care in the final three months of their lives. And more than 12,500 cancer patients (10% of those who die in England each year) spend the last two days of their lives without adequate pain relief".

The report makes a series of recommendations for how variations in end of life care could be better identified and addressed. It calls for "genuine choice about how you are cared for and where you spend the last days and hours of your life" - not only for the sake of patients, but also because a good experience of end of life care can have "a lasting and meaningful impact on friends and family left behind".

7% of nurses reported that they lacked time to complete necessary pain management, and 11% missed treatments and procedures. That is bad enough. But when it came to the kind of person-centred care that is a defining feature of high quality services, the picture was far worse. A staggering 52% reported lacking the time to educate patients and their families, and two out of three (65%) were unable to comfort or talk with their patients.

Now a new report from the Kings Fund and Picker Institute confirms links between workforce pressures and patient experience. They found that on busy wards with high bed occupancy, patient feedback was more negative, particularly in respect of getting comprehensible answers from nurses; and timeliness of response to call buttons.

Conversely, patients at trusts with more nurses per bed reported a more positive experience.

Patient experience was also negatively associated with higher spend on agency staff. This, according to the report authors, is unsurprising, since "use of agency staff provides less continuity of care and stability for hospitals and patients". They comment that "The main focus of concern for spend on agency staff has been on financial savings; our analysis suggests that there are quality issues at stake as well".

The report states that "work pressures and staff shortages in the NHS are escalating, and likely to worsen given financial constraints and the probable impact of UK's withdrawal from the EU". In these circumstances, say the authors, "the risks to patient care are self-evident and it is important to monitor staff wellbeing and how it is impacting on patients".

More deaths. More learning.

Last week saw the publication of a long-awaited report into the deaths of five children in the care of health services in Northern Ireland. The children died in the late 1990's and early 2000's, and bereaved families have had to wait until now for a full and final account of what happened.

There are two common threads running through the families' experiences. The first is that their children died from hyponatraemia - an excessive dilution of sodium levels in the blood. According to the Inquiry report, this is a condition for which "A diagnosis is made easily". It goes on to say that "dilutional hyponatraemia should not happen in a hospital. It is a preventable hospital illness".

The second common thread is institutional denial of error, and appalling treatment of grieving relatives.

The Inquiry report describes "an underlying institutionalised reluctance to admit major shortcomings" and "no acknowledgement of any of the very many failings in care". There was "defensiveness, deceit and a strong inclination... to close ranks". Furthermore, "clinicians did not admit to error for the obvious reasons of self-protection" this defensiveness amounted to concealment and deceit".

These statements are a clear, and dismaying, echo of similar statements in inquiry reports from Mid Staffs, Morecambe Bay and Southern Health. The "Recommendations" section of the report starts by saying that "The lessons of these sad cases must be learnt because it cannot be assumed that such tragedy could not happen again". The Morecambe Bay investigation report carried an almost identical warning: "It is vital that the lessons, now plain to see, are learnt... by other Trusts, which must not believe that "it could not happen here'".

Mistakes can and do happen. There will be further avoidable deaths in NHS services. When they occur, the learning should not just be about improved practice and procedures. It should also be about how the NHS, as a healing organisation, learns to deal honestly and compassionately with bereaved relatives.

Got questions? Get this.

You might think that writing questionnaires is a fairly basic skill for people involved in patient experience work. At the same time, we have probably all had experiences with questionnaires that were too long, or contained overcomplicated or irrelevant questions.

Writing a good questionnaire is harder than it seems, which is why this guide from NHS England is a welcome new addition to their "Bite-Size" series.

There won't be much in it to trouble academic researchers. But it will be handy for any front line practitioners needing to put together a questionnaire while simultaneously handling complaints, writing committee reports, managing volunteers and keeping the boss happy.

Some of the advice may seem basic - for example "avoid using jargon". But as it progresses, the guide takes us into more interesting territory, covering "cognitive testing", "gratitude bias" and "bipolar" versus "unipolar" scales. That may sound as though the authors ignored their own advice to avoid using jargon. But the terms are explained well, within a publication that - as with all Bite Size guides - is clear and concise.

If you need a questionnaire that patients can make sense of, and which will return a set of results that you can make sense of, this is the document to have ready to hand.

Defining patient/public involvement. Should we even try?

Patient and public involvement (PPI) can, at times, look like motherhood and apple pie. We can all agree that it is, by and large, a Good Thing.

Agreeing what we mean by PPI, however, can be harder. We have touched on this issue previously - the excellent "Zombies and Unicorns" paper, for example, stated that "there is a lack of consensus about what effective PPI in research processes might look like and... little conclusive evidence about the best (or worst) ways to invoke PPI in research design, research practice, or research commissioning".

This paper agrees, pointing to "a lack of a common language to share PPI practice... the term PPI is not universal in its application or definition".

In spite of this, attempts to nail down a definition of PPI may not be helpful. They can lead to "semantic intricacies" and "circular debates held primarily amongst academics".

But if we cannot agree a definition of patient and public involvement, how can we aim for consistently good practice? For the authors of this paper, the answer is to aim instead for a basic set of principles - clear enough to be commonly understood, but flexible enough to be applied across different PPI settings.

The paper goes into some detail about the research method, but the important outcome is a set of "essential" and "desirable" PPI principles, assembled from the viewpoints of both patients and professionals.

Equally important is that "the principles suggested provide quality guidelines for best practice, not prescriptive rules. The proposal of a "one size fits all" approach to PPI would be inappropriate, as no single PPI initiative will work for all situations, individuals or agendas". And "whilst PPI must be adaptable to local circumstances and objectives, the essential principles required to underpin its effectiveness may well be universal in their application".

NHS nurses - uncaring, or just too busy?

85% of nurses in NHS hospitals report not being able to complete nursing tasks due to lack of time associated with high patient-to-nurse workloads. So says this study, recently published in BMJ Open.

The authors state that "when nurses have high patient loads... necessary nursing care can be missed because of lack of time". That may come as no surprise. Intriguingly, though, the study goes on to look at the kinds of tasks that are missed when the pressure is on. And it presents clear evidence that while some clinical care may suffer, what really gets hit is the kind of person-centred care that is meant to be the bedrock of good patient experience.

7% of nurses reported that they lacked time to complete necessary pain management, and 11% missed treatments and procedures. But a staggering 52% reported lacking the time to educate patients and their families, and two out of three (65%) were unable to comfort or talk with their patients.

The study cites Sir Robert Francis, Chair of the public inquiry into the Mid Staffordshire NHS Trust, as stating (July 2017) that safe nurse staffing in England still lacks a standardised approach. It confirms his view, with the finding that there is "substantial variation across NHS general acute hospitals in patient-to-nurse workloads. Nurses in some NHS hospitals are caring for twice as many patients at a time as nurses in other hospitals".

This matters because of what the authors describe as "The concern about nurses being uncaring or lacking in compassion". Their view is that the study "refutes the narrative blaming quality of care deficits in NHS hospitals on uncaring nurses".

On this evidence, it would appear that the problem is not so much a lack of compassion as a basic lack of nurses.

Patient Experience magazine - Winter 2018

We kick off 2018 with the latest edition of our Patient Experience magazine, featuring another great batch of topics and insights from the world of patient experience and involvement.

On "experience", we have a story about stolen biscuits. This is a useful reminder that sometimes it's the small kindnesses that count, and that organisational attitudes are revealed not in the grand vision statements, but in day-to-day actions.

On "involvement", we have a discussion of "virtue signalling", whereby moral posturing may be seen as more important than effective engagement.
An item on culturally sensitive approaches to antenatal classes covers both angles, showing how well-handled involvement can lead directly to improved patient experience.

Our collection of reports and studies contains some gems. The Care Quality Commission published three national patient surveys during the autumn, on Emergency Departments, Community Mental Health Services and Children and Young People's experiences. All provided useful insights in their respective areas. But putting all three together alongside the May 2017 Adult Inpatient survey revealed a stark fact - that people with mental health conditions have consistently poorer patient experience across the board. As the new Mental Health Policy Research Unit gets up and running, we hope that the CQC's findings will be central to their agenda.

Need information? Ask a nine year old.

"Communication" features regularly as an issue in patient experience surveys and focus groups. People struggle to understand and retain complex information on health conditions, medication, appointments and so on.

The standard response is to produce leaflets that summarise key facts and can be handed out to patients. But do such leaflets help? What do we do about the fact that, with a UK average reading age of 9 years, much written material will be beyond the grasp of many readers?

The authors of this BMJ paper took a novel approach. They went to a group of nine year olds, taught them about total hip athroplasty, and then asked them to write a patient information leaflet on the subject.

The results are both hilarious and revealing. The children weren't interested in dressing up their messages in official language, or in observing social niceties. They just went straight to the point. "Your hip is old and rotten" was Mohammed's opener. In case you hadn't got that, Jamie helpfully explained, "It is past its sell-by date".

Outlining the procedure, Oliver wrote that, "we saw out the old bone... put the new one in and it's a new hip and then we clip it back up". David's reassurance is, "...don't worry you will be asleep. When you wake up it will all be done".

How about preparation for the op? Maria's advice is, "Don't smoke. Lose weight. Be there on time!!"

The children drew pictures to illustrate key points. Our favourite is the one that carries an important piece of advice for all patients: bring your teddy with you.

People writing patient experience leaflets may not want to adopt all of the children's approaches. Explaining the risks, for example, Mohammed may have been a little too blunt ("You might die!!!!!!"). But in with all the fun is an important point about keeping it simple and saying what you mean.

As the authors put it, "Enlisting children to help formulate these leaflets may seem whimsical. But our experience has shown us that the child can become the tutor, teaching us the value in simple relevant communication."

Healthwatch funding cut. Again.

Last week, Healthwatch England took the step of publishing a letter to the Secretary of State for Health, along with a briefing about the state of funding for the local Healthwatch network.

The documents describe a 37% reduction in funding since the network's first allocation in 2013/14. They say that this is "putting at risk the ability of the network to deliver on its statutory obligations".

By way of evidence, they state that:- Local Healthwatch operate on very tight budgets and with very small staff teams (often only two people) covering very large geographical areas and populations. - There are problems with one or two year contracts not providing sufficient stability to enable long term planning and retain staff.- There are concerns around some councils' confusion between commissioning statutory Healthwatch activity and funding wider voluntary and community sector projects.

Healthwatch was set up in the wake of the Francis Inquiry into "appalling suffering" and avoidable deaths at the Mid Staffordshire Trust. It was meant to be a stronger and more effective patient voice organisation than its predecessor, the Local Involvement Network. But it is hard to see how it can fulfil that expectation with the financial rug being pulled each and every year since its inception.

Last year, our report "What Price Patient Voice" described a widespread failure to understand the value for money offered by Healthwatch and other patient voice initiatives. There is no consensus on what value for money looks like, and no benchmarking of funding levels for patient voice work. This would not be acceptable within other health service functions such as medicines or workforce, where financial assessments, value for money scrutiny and investment rationales are the norm.

Without a clear value proposition, Healthwatch will struggle to develop a strong business case. That makes the network vulnerable to further funding cuts.

It also means that local authorities are free to do what they want with funding that is intended for the statutory functions of local Healthwatch. They can cut as deep as they like. They can do so arbitrarily. And they can get away with it.

Patient experience worse for mentally ill

For the fourth time this year, a national patient experience survey has shown that people with mental health conditions have a poorer than usual experience as patients.

The Care Quality Commission's Children and Young People's Survey has found that patients with a mental health condition, and their parents and carers, reported significantly worse experience for matters including information and communication, transition and continuity, respect for patient-centred values, involvement of family and friends, and awareness of medical history.

The Children and Young People's Survey follows on from the Adult Inpatient Survey and Emergency Dept Survey, which both revealed poorer experiences of care for people with mental illness. A fourth study - the Community Mental Health Survey - reported little sign of improvement for "substantial concerns" raised a year ago, and stated that services "have even declined slightly in key areas".

The latest findings make a nonsense of Prime Minister Theresa May's claim that mental illness is a "hidden injustice". Unjust it might be. But hidden it certainly is not. Four national surveys in a row have shown that people with mental health conditions - children as well as adults - have consistently poorer experiences of care right across the board. The evidence could not be clearer.

The CQC has done an excellent job in bringing this issue to light. It is time now for politicians and providers to act.

Making Sense of Patient Experience

Two years after its publication, it is worth revisiting "Making Sense and Making Use of Patient Experience Data".

The report sheds light on the hard realities of patient experience work at the front line. It makes the point that patient experience staff work in small teams with limited resources.

Particular challenges include gathering an ever-increasing amount of data, keeping up with reporting requirements and ad-hoc requests, and having the time and capability to analyse data and generate insights.

One patient experience lead put it like this, "It's a nightmare to see what's going on. Trying to triangulate between 12 different data sources coming from different angles, presented differently.. " Another was somewhat more succinct: "It's mad. We need to rationalise what we ask".

The result, according to the report's authors, is that: "Staff and patient experience teams are sometimes so busy gathering data and compiling reports, that less time is available to do something with the data - efforts to improve services are in danger of being squeezed out".

Two years on from the report's publication, patient experience evidence is still published in too many different places and in too many different formats. But we have made a start on rationalising it.

We have collated and catalogued all the UK patient experience literature, so that it is now searchable. Our Knowledge Maps series has also had a good response, with people commenting on the value of having lots of key data all in one place. But we see a need to go further.

We are starting to envisage a way of simplifying the task of "gathering data and compiling reports". Discussions with staff in Trusts and CCGs indicate a clear need, and are also indicating some possible solutions. So we're limbering up for some more breakthroughs in the year ahead.

Watch this space to see how we're getting on - or better still, drop us a line if you want to contribute ideas or get involved: info@patientlibrary.net

CQC shines light on "hidden injustice"

A year ago, when the 2016 survey of patient experience in community mental health services was published, the Care Quality Commission said that "substantial concerns remain about the quality of care some people using community mental health services receive. There has been no notable improvement in survey results in the last year".

They suggested that there was "scope for further improvements in a number of areas including: involvement in care, crisis care, care planning and reviews".

Worryingly, the 2017 survey results, just published, show little sign of improvement. In fact, the CQC's own headline is that "patients' experiences of these services across England have not improved and have even declined slightly in key areas".

The survey shows that:
- 26% of respondents said that they did not feel they got the help they needed from crisis care, compared to 21% in 2014.
- 25% of respondents reported they had not seen workers from their mental health services often enough to meet their needs in the last year - up from 21% in 2014.
- 68% of respondents felt listened to by their healthcare or social workers - down from 73% in 2014.

Especially troubling is "a marked trend that the longer a person is in contact with mental health services, the worse the experience reported".

Nearly a year ago, Prime Minister Theresa May described mental illness as a "hidden injustice". Various statements since then have been taken by some as encouraging signs that government - at the highest level - takes mental illness seriously, and that parity of esteem with physical health services is on its way.

But feedback from patients is clearly and consistently telling a different story. And those injustices are not hidden. They're right there in the CQC's evidence.

Patient Experience in Trusts - the new map

For too long, the data on patient experience in NHS Trusts has been too hard to find.

A large volume of evidence emerges from surveys and feedback mechanisms. But it is published across multiple websites, and hundreds of individual web pages. Health professionals can struggle to find what they need. Members of the public (the source of all the data) may not even know where to begin.

In a major breakthrough for patient experience reporting, we have brought all the key Trust data together into one simple to use map. This is a huge increase in the accessibility of patient experience data. It strengthens Trusts' transparency and public accountability. And it helps the NHS on its journey towards providing information digitally and seamlessly.

The map is part of our continuing mission to bring patient experience into the light.

The map will make life easier for policymakers, commissioners and providers. It also makes the information far more accessible to members of the public, who fund and use NHS services, and who give time and goodwill to make their experiences known.

We'd like to say a big thank you to all the people from Trusts and CCGs (you know who you are!) who helped us with the concept and design, and then tested various versions.

The "Patient Experience in Trusts" map is available on the Patient Experience Library website, along with other Knowledge Maps that help to make important sources of evidence more visible.

Patient experience: Lessons from Hillsborough

It was good to see NHS England hosting two "Learning from Deaths" events last week - one for bereaved families and one for health professionals.

The events were part of efforts to ensure that the recommendations contained in the CQC's "Learning, candour and accountability" report are implemented in a clear and structured way.

By a remarkable coincidence, last week also saw the publication of a report by Bishop James Jones, which aims to "ensure the pain and suffering of the Hillsborough families is not repeated".

Entitled "The Patronising Disposition of Unaccountable Power", the report reveals striking parallels between the experiences of the Hillsborough families and of people who have sought justice following avoidable deaths within health and care services.

The Bishop remarks that "The [Hillsborough] families know that there are others who have found that when in all innocence and with a good conscience they have asked questions of those in authority on behalf of those they love the institution has closed ranks, refused to disclose information, used public money to defend its interests and acted in a way that was both intimidating and oppressive".

Institutional reactions of this kind have been documented in the Francis report on Mid Staffs, the Kirkup report on Morecambe Bay and the Mazars report on Southern Health.

NHS staff do a fantastic job under immensely difficult conditions. Day after day, they care for people, cure sickness and save lives. On the rare occasions when things go wrong, a poorly handled institutional response can let down staff, as well as patients.

The Bishop observes that a lack of honesty does not come from individuals - it is institutionally embedded. It is "a cultural condition... an instinctive prioritisation of the reputation of an organisation over the citizen's right to expect people to be held to account".

The report urges the Prime Minister and Home Secretary to "ensure that those responsible for our national institutions listen to what the experiences of the Hillsborough families say about how they should conduct themselves when faced by families bereaved by public tragedy".

Mid Staffs, Morecambe Bay and Southern Health are public tragedies where too many avoidable deaths were followed up by inadequate investigations and dismissive treatment of bereaved families. Shrewsbury and Telford is likely to fall into the same category.

We hope that those responsible for the NHS Learning from Deaths programme will take careful note of the contents of this report.

CQC vs Twitter: which is better?

The likelihood of patient feedback being dismissed as merely "anecdotal" is, thankfully, diminishing. Healthcare professionals know that patients can offer useful insights into quality and effectiveness - picking up issues that they themselves might miss.

Now a new study lends added weight to the idea that patient feedback is not just an optional extra, but a key part of performance and risk management within the NHS.

"Wisdom of patients" describes a project carried out by specialists in risk analysis and behavioural science. They took large volumes of patient feedback on Trusts and hospitals, from sources including Twitter, Facebook and Care Opinion. They then applied classifications and sentiment analysis to produce a "collective judgement score", or CJS. Finally, they compared the CJS with CQC inspection ratings for the services in question.

They found that on average, patient feedback ahead of a CQC inspection is better for hospitals that subsequently get a higher CQC rating. The better the patient feedback in the 90 days prior to a CQC inspection, the greater the likelihood of a more positive overall rating.

Interestingly, some 'Inadequate' hospitals scored a high collective judgement score (from the social media feedback), as did some 'Requires improvement' hospitals. So it would appear that patients are better collective judges of organisations performing well than they are of organisations performing poorly.

In spite of this, the researchers state that "while the collated patient feedback cannot perfectly identify poorly performing organisations, it can identify those organisations that are most likely to be performing poorly. Indeed, not a single organisation with a [low] CJS was rated 'Good' or 'Outstanding'.

So is patient feedback via social media a better guide to service quality than a CQC inspection? Probably not - or at least, not yet. The authors of this paper are clear that "there is still a lot to be learnt about the use of aggregated patient feedback. It is possible that the predictive power ...could be improved".

Even so, there is already "a positive association between the collective judgement score and subsequent inspection outcomes". And the paper concludes that "The near real-time, automated collection and aggregation of multiple sources of patient feedback should be used to help prioritise inspections".

Be warned - if you're not a statistician, this paper may not be an easy read. But if you persevere, you may find yourself thinking twice about how you use your social media feedback.

A&E - what do patients think?

We hear a lot about the pressures that A&E services are under, including many reports that patients misuse the service by turning up there as a first, rather than last, resort.

The CQC's 2016 Emergency Department survey (released last week) shed interesting light on this issue. 42% of respondents did not go to A&E as their first port of call - they used alternatives such as GPs, or the 111 and 999 numbers. But three-quarters ended up in A&E anyway because they were referred there by those other services.

There may well be misuse of A&E by some people. But it may not be as widespread as some sources would have us believe.

Many patients - once there - have a very favourable experience of the service. There are high levels of confidence in clinicians, and a significant majority feel listened to and respected (78%). Even more (82%) had enough privacy while being examined or treated.

On the downside, fewer than half of those who were distressed felt that staff "definitely" reassured them. And nearly half (45%) reported being discharged without any account being taken of their family or home situation. This ties in with various Healthwatch reports (local and national) about problems with leaving hospital.

A further correlation is for people experiencing mental ill health. Their experience of A&E is poorer than for other patients, tying in with findings from the 2016 acute inpatient survey.

Patient experience as a lever for funding... and for evidence based commissioning, and more!

The autumn 2017 edition of Patient Experience is out now, with news, views and research updates on patient experience and patient/public involvement in healthcare.

The journal features comment from a former Head of Fundraising at a major hospital charity, who explains how patient experience can be used to focus funding on the "additional extras" that can do so much to improve people's hospital visits.

Further comment comes from a senior researcher who looks at evidence-based commissioning, and considers how "knowledge mobilisation" can help commissioners put academic writings to practical use.

We have all our usual reviews of the latest patient experience studies and surveys - helping you to keep track of the resources that can guide your policy and practice. And we offer pointers to training and conference events - some supporting professional development, and some open to patient representatives as well.

We hope you'll enjoy this edition of Patient Experience and if you have ideas for other great content we should be featuring - let us know! info@patientlibrary.net

Harm to healing - partnership with patients

This valuable report looks at the engagement and partnering of patients and/or their families who have been harmed in healthcare, and considers psychological aspects of recovery.

The authors find that "patients/families who have been harmed in healthcare grieve in a way that is similar to, but distinct from other forms of loss" (our underline). Importantly, they state that "Healthcare providers and leaders in healthcare organizations may also go through a grieving process similar to what patients/families experience".

They describe a "second harm", experienced by patients/family when "the healthcare organization does not provide information with a reasonable explanation about the original harm in an open, timely and respectful manner". This matters, given the CQC's recent statement (in "Learning, Candour and Accountability") that "we have heard from families who had to go to great lengths themselves to get answers..., who had their experiences denied and their motives questioned".

The report makes it clear that the process of engaging patients and relatives in investigation and remedial work is far from straightforward. "Patients/families engaged too early in their recovery journey may unintentionally suffer further harm". Health professionals need to understand that "there is a difference between eagerness [to be involved] and readiness ... eagerness can overwhelm the readiness".

We welcome the work currently being undertaken on "learning from deaths", but hope that it will not limit itself to simply reviewing systems and procedures. The NHS, as a healing organisation, also needs to look after the emotional wellbeing of patients, relatives and staff who are dealing with trauma and grief.

How not to learn from mistakes

"Avoidable errors within maternity can have devastating consequences for the child, family and carers and contributed significantly to the £1.7 billion cost for clinical negligence in 2016/17. Possibly the most devastating and undoubtedly the most expensive, are claims for avoidable cerebral palsy".

This opener to "Five years of cerebral palsy claims" sets the scene for the national goal of "reducing the rate of stillbirths, neonatal and maternal deaths and brain injuries that occur during, or soon after, birth by 50% by 2030".

That goal is accompanied by an ambition for the NHS to become the "world's largest learning organisation".

We wholeheartedly support both goals. But to become the "world's largest learning organisation", the NHS will have to address a major flaw in its learning culture.

Consider this quote from "Five years of cerebral palsy claims": "[There is] evidence of poor quality serious incident investigations at a local level - The patient and family were only involved in 40% of investigations".

Does that sound familiar? It should do, because it has been said many times before. Here are some examples:

In 2015, the Mazars review of unexpected deaths at the Southern Health NHS Foundation Trust described "an ad hoc and inadequate approach to involving families and carers in investigations".

In June 2016, the RCOG "Each Baby Counts" report revealed that "in a quarter of instances [of death or brain injury] parents were not made aware that a local review was taking place. Just under half the time, parents were made aware ...but were not invited to contribute".

In July 2016, the PHSO's "Learning from Mistakes" report into the death of three year old Sam Morrish said "local NHS investigation processes were not fit for purpose... and they excluded the family".

In December 2016, the CQC's "Learning, Candour and Accountability" report said "we have heard from families who had to go to great lengths themselves to get answers..., who had their experiences denied and their motives questioned".

It is clear that a key reason for the failure of the NHS to learn from mistakes is the failure to hear from patients, carers and families.

"Five years of cerebral palsy claims" is a welcome addition to the evidence on patient experience. But we earnestly hope that it is not simply added to a growing pile of reports that have all said similar things.

In "Learning, Accountability and Candour", the CQC said, "We owe it to [bereaved families] to stop talking about learning lessons, to move beyond writing action plans, and to actually make change happen". Let us hope that the NHS - as it moves towards becoming the world's largest learning organisation - gains a better understanding of patient experience as a vital learning resource. And that alongside evidence of patient experience, evidence of actual change soon starts to emerge.

Patients, professionals, power and culture

Last week, we looked at "hostage bargaining syndrome" - the propensity of vulnerable patients to deal with powerful and expert clinicians as if negotiating for their health from a position of fear and confusion.

This week's featured report looks at the position of health professionals, and considers how they react to more assertive patients - the ones who are (or are perceived to be) complaining.

Interviews with 41 staff in eight different NHS settings explored how they made sense of complaints and of patients' (including families') motives for complaining.

The authors found that complaints were seen as a breach in fundamental relationships involving patients' trust or recognition of professionals' work efforts. Complaints were most often regarded as coming from patients who were inexpert, distressed or advantage-seeking. Accordingly, care professionals positioned themselves as informed decision-makers, empathic listeners or service gate-keepers.

Troublingly, the authors note that it was rare for interviewees to describe complaints raised by patients as grounds for improving the quality of care.

Taken together, both last week's and this week's featured reports indicate that there is much more to "patient voice" than surveys and "engagement activities". Patients feeling vulnerable and powerless may be too frightened to say anything much. Those who do speak up may be seen by health professionals as troublesome.

Understanding patient experience is not just about feedback systems and action plans. It is also about power relationships and organisational culture.

Patient? Or hostage?

There is much talk in the NHS these days of "person-centred care", and of patients and clinicians being "partners in care". The aim is to move on from the old "doctor knows best" attitude, and to encourage "empowered patients" to participate in decision-making.

Of course, culture change is often easier said than done, and this paper from America's Mayo Clinic describes how some patients can succumb to "hostage bargaining syndrome" (HBS), whereby they behave as if negotiating for their health from a position of fear and confusion.

The paper observes that medical care has recently become more focused on serving patients as consumers. But most commercial services are "want" services, while medical care is a "need" service that consumers-turned-patients often dread and may delay receiving.

Patients are often reluctant to assert their interests in the presence of clinicians, whom they see as experts. The higher the stakes of a health decision, the more entrenched the socially sanctioned roles of patient and clinician can become. HBS is especially seen when serious illness unfolds over the course of multiple, complex, emotionally laden interactions with clinicians. Cancer care and intensive care, for example, are characterised by a high degree of dependence and powerlessness for patients.

HBS can manifest as understating a concern, asking for less than what is desired or needed, or even remaining silent against one's better judgment. When HBS persists and escalates, a patient may succumb to learned helplessness, making his or her authentic involvement in shared decision making almost impossible.

The authors conclude that clinicians often have the power to arrest and reverse HBS by appreciating, paradoxically, how patients' perceptions of their power as experts play a central role in the care they provide.

Patient Experience in England

NHS strategies state that an understanding of patient experience is central to development of "person-centred" services. But our latest publication reveals that NHS staff are bombarded by eighteen separate reporting mechanisms on patient experience. Data arrives in different formats and at different times, and some of it is of questionable quality.

The report, "Patient Experience in England", cuts through the muddle, explaining how patient experience evidence is gathered and disseminated. It shows what has been learnt about patient experience in England over the last year. And importantly, it looks at whether health service providers are acting on the learning.

Good news from the last year includes generally positive experiences for cancer patients, and a sense among hospital inpatients that confidence and trust in clinical staff has gone up. However, other findings strike a warning note:

- There are "significant declines" in key areas of person-centred care. - "Substantial concerns" remain about the quality of care some people using community mental health services receive.- In maternity services, some women were left alone at a time that worried them during early labour, and of those who raised concerns, not all felt that their concerns were taken seriously.

The report goes on to list recent research studies that have shown an "evidence-practice gap", with Trusts, CCGs and GPs all having difficulty in translating patient experience evidence into better service delivery.

Part of the problem is that patient experience leads lack parity with clinicians in terms of their professional development and support. If they are to lead Trusts and CCGs in understanding patient experience, they need better access to the literature. We are providing a solution in the form of the Patient Experience Library, and are calling on NHS England to work with us to open up access to the Library as widely as possible.

Improving patient experience in primary care

A few weeks ago, we reported on the 2017 GP Patient Survey results. Our comments briefly touched on this observation, from "Improving patient experience in primary care": "...surveys are a valuable resource for monitoring national trends in quality of care [but] may be insufficient in themselves to fully capture patient feedback, and in practice GPs rarely used the results of surveys for quality improvement."

We're returning to "Improving patient experience..." to recommend a read of the report. Be warned - at some 450 pages, it's a long read. There is, however, an excellent summary offering some thought provoking findings, including these:

- Patients are reluctant to be critical when completing feedback questionnaires. Reasons included the need to maintain a relationship with the GP, gratitude for NHS care, and power asymmetries. Patients find questionnaires to be limited tools for feeding back concerns about consultations.

- Ethnic origins of patients have a bearing on patient experience. Low scores given by Pakistani patients in surveys such as the GP Patient Survey reflect care that is genuinely worse, and possibly much worse, than that experienced by their white British counterparts.

- GPs are positive about the concept of patient feedback, but struggle to engage with [it] and make changes under current approaches to measurement.

- Within practices, and in out-of-hours settings, staff neither believed nor trusted patient surveys. Concerns were expressed about their validity and reliability, and the likely representativeness of respondents.

The authors conclude that there is "a huge gap" between the measurement of patient experience, and the actions being taken as a result. Importantly, they state that "the major question for the future is how we are going to take the wealth of data on patient experience and make experiences better, rather than simply better understood".

It is impossible, in this short review, to do justice to such a wide-ranging and in-depth study. We recommend a read of the report.

Self-management: More harm than good?

With increasing demand for health services, propelled by an ageing population, and long-term conditions such as diabetes, it is no surprise to see NHS strategies placing more and more emphasis on "self-management". Often this is couched in the language of "shared-decision-making" and patient empowerment" - on the face of it, desirable goals.

This short and snappy presentation, however, raises important questions about patients' ability to manage elements of their own care. It considers social and cultural determinants of health, and makes the point that "A background of historical oppression or social inequity will not make the [process] a collaboration but may reinforce pre-existing negative determinants of health".

The extent to which self-management burdens the patient, rather than empowering him/her also depends on the balance between care needs and the patient's own ability to fulfil them. "Patients with few demands but low capacity may experience burden whereas those with many demands but high capacity may not".

The presentation comes from Canada's "Measuring Patient Centred-Care Forum" and to some extent reflects the Canadian context. But the overall message is relevant to UK audiences as well: self-management may be an important part of NHS strategy, but we should not take its apparent benefits for granted.

We can't be patient-centred if we don't know what it means

The NHS wants to be patient-centred. We know this because the phrases "patient-centred" and "person-centred" appear repeatedly in NHS vision statements, mission statements and strategies.

But what does "person-centred care" actually mean? Unfortunately no-one seems to know.

There are various definitions floating around, but no agreement on which one is best. So we have an NHS that is setting a course towards something that hasn't been clearly defined.

That's like setting sail for America when you don't really know where America is. With lots of luck and a fair wind, you might just get there. But it's more likely that you'll go round in circles getting ever more confused.

A recent editorial piece from the Journal of Clinical Nursing makes some powerful points about why this matters.

Firstly, in the absence of clarity and rigour, there is a tendency to simplify. A favourite idea is that "person-centredness is working with what matters to the patient; it is about acknowledging the values, choices and preferences of patients, and it is about a certain type of nurse-patient relationship - always a compassionate one!" But this kind of over-simplification misses the point that "facilitating choices and... sustaining a compassionate relationship are probably the most challenging aspects of nursing".

Another concern is that practitioners "generally experience working in contexts and cultures that are inherently unsupportive of person-centredness, meaning they cannot embody or practice in person-centred ways". This view will be familiar to anyone who has read the research indicating that in order to look after the patients, you have to look after the staff.

The authors go on to consider measurement of person-centredness. "A fundamental principle of any systematic evaluation is clarity of definition... Given that we observe few clear definitions in use, then how can organisations evaluate person-centredness?"

The conclusion is that "publishing incomplete and poorly considered definitions of person-centredness promotes the view that person-centredness is less complex than it is and that it is easier to implement than it is. This can lead to unnecessary burden or even guilt for many in our profession as to why we are not achieving it better than we do or even a collective false consciousness that we have already achieved it and should be moving on to the next fad or miracle improvement/innovation".

This succinct and well-argued article nails an issue that lies at the (confused) heart of current NHS thinking.

Publishing patient experience data does not make it transparent

"transparency - the free, uninhibited flow of information that is open to the scrutiny of others-has been far more positive than many had anticipated, and the harms of transparency have been far fewer than many had feared. Yet important obstacles to transparency remain..."

A useful report from the American Lucian Leape Institute looks at various kinds of transparency - for example among clinicians (peer review) and between healthcare organisations (collaborative approaches). But the recommendations that most interested us were those focusing on transparency of both clinicians and organisations with the public.

Two recommendations in particular jumped out:

- "Provide patients with reliable information in a form that is useful to them."- "Present data from the perspective and needs of patients and families."

Here in England, we spend huge amounts of time and money gathering and analysing patient feedback. The results are published - but not always in ways that aid transparency.

National patient surveys produce complex statistical data, disseminated via multiple spreadsheets. Qualitative evidence from other sources is written up in reports that use complex language across dozens of pages. Even professionals find it hard to understand some of this stuff, never mind the general public.

Worse still, the published data - both quantitative and qualitative - is scattered across hundreds of different websites. Before you can read the data, you first have to find it - and that in itself is a tough challenge. We know, because we spend every day of the week tracking down material for the Patient Experience Library.

We are determined to bring patient experience into the light. An important first step has been the creation of the Library - the first ever comprehensive database of patient experience evidence. We have started to build on that with Knowledge Maps and Insight Reports that make the evidence more visible and understandable. We have further developments in the pipeline that will continue to bridge the gap between clinicians and healthcare organisations, and the general public.

Transparency, in respect of patient experience, does not mean simply gathering and publishing data. It means "providing patients with reliable information in a form that is useful to them". We are committed to doing exactly that.

Safe staffing in maternity services

In March 2015, the Kirkup inquiry into unnecessary deaths in the maternity unit at the Morecambe Bay NHS Trust published its findings. In an uncomfortable echo of the Francis Inquiry into deaths at the Mid Staffordshire NHS Trust, Kirkup found that failure to hear from patients was an underlying cause of repeated errors. "The treatment of complainants... exemplified the problems commonly reported, including defensive 'closed' responses, delayed replies, and provision of information that complainants did not find to be accurate".

In April 2017 the Secretary of State for Health ordered an investigation into deaths in the maternity unit at the Shrewsbury and Telford Hospital NHS Trust. It seems likely that staff attitude and communication will be examined.

In this context, we welcome a consultation by NHS Improvement and the National Quality Board on safe staffing in maternity services.

Our response will make the point that safe staffing is not just about staff/patient ratios, shift patterns and skills and proficiency. All of these matter - but so does patient voice.

The consultation document refers to "Patient, carer and staff feedback" and lists seven different sources of patient feedback. It states that areas of concern highlighted by women and families must be carefully scrutinised. It does not, however, say who should carry out the scrutiny, or how.

Ideally, maternity staff would turn to patient experience leads for help. Other evidence shows that hospital staff find it hard to act on patient feedback, and need "organisational readiness" - back-up from other parts of the system - to be able to use feedback to increase safety and drive improvement.

But patient experience leads are not always well supported, and lack parity with their clinical colleagues. NHS clinicians work in a culture that consciously develops their expertise. So they have access to comprehensive professional databases to guide their practice and professional development. Patient experience leads have a similar need for access to knowledge. And yet they are expected to resort to Google. That's not sensible, and it's not safe.

Safe practice depends on hearing the patent voice. And safe staffing depends on teamwork. Maternity staff cannot be experts in everything - they need help from "the team beyond the ward". That wider team includes patient experience leads. And they - like maternity staff - need to be better supported.

The consultation on safe, sustainable and productive staffing in maternity services is here.

How reliable are filmed patient stories?

Are filmed patient stories a good thing? There seem to be more and more of them about, so they must be popular.

Perhaps that is because film-making is so much easier nowadays than it used to be. Filmed testimony can also be more compelling than a written report. And let's face it - in today's busy world, anyone who has a choice between a two-minute film clip and a twenty page report might well settle back and reach for the popcorn.

This report, however, sounds a note of caution. The authors note that:

- It can be assumed that patient testimony is particularly raw and honest. But narrative theorists see stories not so much as truth, but as the crafting of truth to propel and reshape meaning. Patients sometimes have agendas of their own.

- Some people are better able to articulate complex care experiences, or have greater "on screen" charisma than others. They can become more influential "stars" than other participants in patient films.

- The "talking head" format can appear to offer a direct and unmediated window into the experiences of patients. But the editing process necessarily fits talking heads within a structured narrative, directing thoughts in some ways, and limiting others.

The authors conclude that "there is something inherently fragile, or fluid, about patient narrative as a form of valid knowledge". Challenges include those listed above. But at the same time, patient film work can counter the "dumbing effects of questionnaires" and the "blindness to patients [caused by] heat maps and endless data collection".

This paper will offer plenty of food for thought for anyone involved in committing patient experience to film.

GP Patient Survey results - should we be worried?

"...surveys are a valuable resource for monitoring national trends in quality of care [but] may be insufficient in themselves to fully capture patient feedback, and in practice GPs rarely used the results of surveys for quality improvement."

This observation, from "Improving patient experience in primary care" is worth considering alongside the results of the 2017 GP Patient Survey, newly published by NHS England.

The survey provides information on patients' overall experience of primary care services and their overall experience of accessing these services. The key findings contain plenty of good news - for example, that 85% of patients rate their overall experience of their GP surgery as good, and that 87% say the receptionists at their GP surgery are helpful.

The downside is that for every single key finding under "overall experience" and "access to in-hours services", patient experience has decreased since 2016. Sometimes it's not by much - 0.3% for "convenience of appointment" for example. Other decreases, however, are larger, and NHS England makes the point that "Given the size of the survey, even small changes in percentages are likely to be statistically significant".

Should we be worried? Well, yes - on two counts. Firstly because Sustainability and Transformation Plans, with their mantra of "care closer to home" will rely on primary care services to help keep the pressure off acute services. Any reduction in patient experience of primary care must be worrying for STP leaders.

The second cause for concern is that, as stated by the National Institute for Health Research, "While the GP Patient Survey data for any given practice is used as part of its CQC inspection record, there is no standard requirement for practices to review that data or act upon them. As a result there are wide variations in the use of the data and the value that can be derived from them".

So we know two things about the 2017 GP Patient Survey results. One is that there are statistically significant declines in patient experience since 2016. The other is that GPs don't have to do anything about it. That's not to say they won't. But at the whole system level, we have an NHS that seems content to gather patient experience data, while acknowledging that "there are wide variations in the use of the data and the value that can be derived from them".

All STPs make reference to "improved patient experience" as an outcome from the "whole system" transformations they propose. The GP Patient Survey indicates room for improvement within primary care - the absolute front line of public engagement with the health system. How will STP partnerships respond? We shall see...

Patient voice is our canary in the coalmine. Let's make sure we can hear it.

We are all patients in the NHS. We know, from personal experience, what the difference is between good and bad patient experience.

So why, when the NHS as a whole tries to understand patient experience, does it make such a dog's dinner of it?

The NHS collects a mountain of evidence on patient experience, from sources including the NHS Friends and Family Test, Care Quality Commission patient surveys, the GP patient survey, local Healthwatch reports, and online feedback tools like NHS Choices star ratings. On top of that it piles further information from local questionnaire surveys, focus groups and public meetings. And on top of that are all the compliments and complaints that come directly from patients.

All these datasets present different information in different ways, so it is very difficult to collate them, or make meaningful comparisons. In addition, the quality of some of the data is questionable.

The NHS has plenty of data on patient experience. It's just that no-one can make sense of it all.

Plenty of studies have made exactly this point. A 2015 report entitled "Making Sense and Making Use of Patient Experience Data" had this quote from a patient experience lead: "We are data rich, but we don't bring it all together (national surveys scores and comments). It's a nightmare to see what's going on. Trying to triangulate between 12 different data sources coming from different angles, presented differently..."

Another report - the 2016 Carter Review - said "...hospitals and commissioners were often looking at different datasets and from different perspectives with inevitable disagreements."

Companies in the commercial world use customer experience as a driver for service improvement. They understand the value of feedback from the general public, and make sure that collection and analysis is clear and purposeful. It is hard to imagine a big corporate allowing its outlets to muddle through heaps of customer experience data gathered from dozens of incoherent sources.

Patient experience - like customer experience in the commercial world - can be understood. But understanding it depends on having a consistent analysis of evidence drawn from reliable sources.

We need to sort through our mountain of evidence on patient experience. We need to pick out a few reliable sources that have proven value in guiding policy and practice. Then we need to stick with them. If some sources are not very good, we need to be very brave, and say so. Then we need to stop using them.

In the NHS, the patient voice is the canary in the coalmine - the early warning system that can alert us to potential problems. We need to hear our canary. But we don't need to hear canaries, chaffinches, woodpigeons, crows - the whole darn woodland. Why not? Because that's just noise.

A 2015 report, "Beyond Metrics?" described the proliferation of patient voice measures as "adding more to the noise without amplifying the signal". And the problem with noise is that people can't make sense of it. So they stop listening - they screen it out.

In the coalmine you know that if you can hear the canary, you're safe. If you can't hear it, you know there's a risk - and then you can act. If you're not even listening, you don't know where you are. And then you're really in trouble, because you don't know what to do.

Beware zombies and unicorns

"Lack of clarity on what PPI is (or might be) has given rise to a poorly monitored, complex field of activity..."

This statement is the opener to a paper described by its own authors as a "provocation". Their concern is that the investment of time and resources in much patient and public involvement (PPI) is taking a form of "busywork" - i.e. a time-consuming technocratic distraction.

They remark that Ironically, the notion of the usefully participating, evidence-engaged patient or citizen has become ubiquitous at the same time as ignorance and "bullshit" have been successfully harnessed as resources in "post-truth" politics".

The paper reviews the development of patient and public involvement in health research, and observes that "there is a lack of consensus about what effective PPI in research processes might look like and... little conclusive evidence about the best (or worst) ways to invoke PPI in research design, research practice, or research commissioning".

An underlying problem is that "Different models of PPI carry distinctive and sometimes contradictory assumptions about the types of public to be involved, the knowledge those publics might bring to bear, and their degree of involvement in decision-making processes."

Furthermore, people who step forward as patient/public representatives have varying motives for doing so. Some are "predominantly concerned with promoting and defending their own interests and values against other participants" while others "view themselves as interdependent members of a social collective and [are] oriented towards collective ends and the common good".

The authors conclude that "formal PPI can be seen as a ghastly composite of a zombie policy that continually pops up, offering (but never providing) a solution to purported deficits in democratic engagement, despite being useless in the last policy round, and a unicorn policy, a mythical beast, prevalent, and much discussed but never discovered in replicable form in any health-care system. This zombie/unicorn hybrid creates PPI as a form of busywork in which the politics of social movements are entirely displaced by technocratic discourses of managerialism".

If you're involved in PPI, don't be offended by this last paragraph! The paper may be, as the authors describe it, "a provocation", but it is well-founded, well argued, and raises important issues that deserve serious consideration.

Why it's hard to act on patient feedback

"Patients are increasingly being asked for feedback about their healthcare experiences. However, healthcare staff often find it difficult to act on this feedback in order to make improvements to services."

So says a recently published study based on work with staff in three separate NHS Trusts.

The authors note that a growing international body of evidence suggests that patient experience, safety and clinical effectiveness are inextricably linked. But in spite of the wealth of feedback now available to healthcare services, there is little evidence that this has led to improvement in the quality of healthcare. "Simply providing hospitals with patient feedback does not automatically have a positive effect on quality standards".

Why is it that hospital staff find it difficult to translate patient experience into service improvement? The study points to three factors:

Normative legitimacy: To what extent are staff receptive to patient feedback? Is good patient experience seen as essential to safety and clinical effectiveness, or as a "nice but not necessary" add-on to clinical priorities?

Structural legitimacy: To what extent are staff teams (on a ward, say) empowered to identify and act on service improvement opportunities prompted by patient feedback?

Organisational readiness: Where staff teams need support for improvements from other parts of the hospital or the wider Trust, how ready are those other staff teams to pitch in and help?

The authors conclude that:

Without the moral imperative to listen to the patient voice, improvement rarely takes place.

Staff must have sufficient autonomy, ownership and resource in relation to a problem in order to enact change.

Insufficient organisational readiness usually blocks action planning.

This is a must-read paper, full of analysis and insight that will strike a powerful chord with anyone who has worked at the front line of NHS patient feedback and quality improvement.

When patients go unheard, people die.

"It is vital that the lessons, now plain to see, are learnt and acted upon, not least by other Trusts, which must not believe that 'it could not happen here'. If those lessons are not acted upon, we are destined sooner or later to add again to the roll of names.The Report of the Morecambe Bay Investigation [into avoidable deaths]. Dr Bill Kirkup CBE, March 2015

"I had a meeting with a trust member and the analogy he used was that they were a bit like British Airways and it was like losing baggage. I really couldn't believe what the person was saying to me. It was harrowing.Parent of a patient who died in the care of the Southern Health Trust. December 2015

The best known example is the disaster at the Mid Staffordshire NHS Foundation Trust, where a series of unnecessary deaths led to the landmark Francis Inquiry. In his report, Sir Robert Francis was unequivocal about the reason for what he described as "appalling suffering" in the Stafford hospital. He said that it "was primarily caused by a serious failure on the part of a provider Trust Board. It did not listen sufficiently to its patients."

We think of Mid Staffs as a particularly low point in the history of the NHS. But it is not the only one.

Two years after Francis, the Kirkup inquiry revealed unnecessary deaths of mothers and babies in a maternity unit run by the Morecambe Bay NHS Trust. The inquiry report said that patients and relatives had encountered "defensive 'closed' responses, delayed replies, and provision of information that complainants did not find to be accurate."

Soon after that, the Mazars review into unexpected deaths at the Southern Health NHS Foundation Trust described "an ad hoc and inadequate approach to involving families and carers in investigations".

Different places, different providers, different services. But all joined by a common thread: a failure to value patient voice.

There is more. A review of unexpected deaths in a maternity unit run by the Pennine Acute Hospitals Trust said that "Staff attitude has been a feature of a significant number of incidents". A Parliamentary and Health Service Ombudsman report into the death of a three year old child in Devon said that "local NHS investigation processes were not fit for purpose and they excluded the family".

People sometimes think that "patient experience" means dealing with grumbles about appointments, car parking and hospital food. Or compiling Family and Friends Test reports, and wondering whether anyone will actually read them.

The nitty-gritty of patient experience may seem trivial. But the patient voice is the canary in the coalmine. It is an early warning system that can help managers to spot that all may not be well at the front line.

A patient-centred NHS will take every piece of patient feedback seriously. Because when patients go unheard, people die.

The Care Quality Commission is asking for people's views on "How can we assess how well providers review, investigate and learn from deaths?" The consultation is open until the 14th July 2017. Details here.

The Patient Experience Library's submission to the consultation can be seen here.

The state of patient experience - 2017

There are important differences between the American and British health systems. But that doesn't mean we can't learn from our US colleagues.

The Beryl Institute's "State of Patient Experience 2017" report is based on a survey of 1,644 healthcare organisations, both within and outside the US. It has some interesting findings that could be relevant to how patient experience work is carried out in the UK. Consider these points :

Patient experience was seen as the top organisational priority, but employee engagement/satisfaction was second. There seems to be an understanding that happy staff equals happy patients.

In US hospitals, investment in patient experience staff is growing year on year.

In US hospitals, the leadership's desire for improved patient experience is just as much a driver for action as government-mandated measures. The top two supporting factors are "strong visible support from the top" and "formal PX structure or role". "Highly engaged staff" are seen as a further key factor in achieving positive patient experience.

The overarching message seems to be that leadership, investment, a formal PX role and engaged employees are key drivers for better patient experience. It's what might be described as a "whole system" approach.

As Sustainability and Transformation Partnerships start to pick up their momentum after the general election lull, those leading STPs would do well to bear the American learning in mind.

Almost all STPs mention "improved patient experience" as a desired outcome. Achieving that requires a systematic approach, with focused leadership, plus investment. In the detail underpinning STP planning, that needs to be stated.

Patient/public involvement: Should money come into it?

Patient/public involvement: Should money come into it?

Across the UK health and care sector, many thousands of people are involved as patient/public representatives. As committee members, research participants, focus group contributors and survey respondents, they offer huge amounts of time and "expertise by experience" - nearly always as volunteers.

If patient and public input to the sector's learning and development has a value, should the value be recognised? Should our volunteer contributors become paid contributors?

Canada's Change Foundation has considered the issue. They recognise that payment for patient and public involvement (PPI) could undermine the ethos of volunteerism, or could engender a sense that opinions are being bought, rather than freely sought.

But they also consider the downside of volunteerism. This includes the possibility that expecting people to participate without payment could mean that low income patients are excluded from deliberation and debate. This matters in the context of health inequalities, where the most vulnerable in society are already relatively voiceless.

The authors state that they are "neither for nor against paying. Our concern is to work within the principles of fair, equitable and barrier-free public engagement". So they decide the payment issue on a case-by-case basis.

To help them do so, they have developed an easy-to-use decision tool. This sets the question of payments for PPI against parameters that guide decision makers towards a rational outcome.

By using the tool, you may or may not end up paying PPI participants. But at least you'll be able to explain how you have come to your decision

Earth to Simon Stevens: Invest in patient experience

People involved in patient experience work can sometimes feel overwhelmed by the quantity and variety of reporting. There is a constant flow of feedback and reports from the CQC, Healthwatch, Friends and Family Test, Care Opinion, NHS Choices and more. Methods and approaches can change over time, making it hard to get a baseline for patient experience, or a sense of whether things are getting better or worse.

The Adult Inpatient Survey is a refreshing constant in the reporting landscape. The 2016 survey, just published, is the 14th of its kind, and so is able to offer insights into inpatient experience over the long term.
The good news is that traditional patient bugbears - communication, cleanliness and hospital food - all show signs of improvement. Confidence and trust in clinical staff has also, encouragingly, gone up.

The spanner in the works comes from what the Picker Institute (which co-ordinated the survey) describes as "significant declines in key areas of person centred care".

Fewer patients feel involved in decisions about their care and treatment. Fewer report positive experiences of leaving hospital. And fewer believe they are getting enough help to recover and manage their condition. All this will come as a blow to an NHS that wants to help patients to be more active in self-managing their conditions.

Picker comments that "the results highlight a risk that improvements of the past could be lost if trusts and policy makers fail to keep the provision of high quality person centred care a top priority". We agree.

Publication of the report highlights two issues that are vital to a well-functioning NHS. The first is transparency. Publication of findings like these - consistently, and over many years - help us all to see what works, and what doesn't, from the patient's point of view.

The second is the value of patient experience work. Small investments in rigorous survey work can reveal insights (such as a possible threat to patients' ability to self-manage) that could cost the NHS very large sums of money.

The report has a clear message to Dept of Health policymakers: there are significant declines in key areas of person centred care. It also has a clear subtext: patient experience work offers valuable insight. And that is worth investing in.

STPs versus public opinion - a divergence of views

NHS England's Five Year Forward View promises a "radical transformation of patient experience". But this report from the Health Foundation indicates that the general public expect their experience to get worse, not better.

According to polling by Ipsos Mori, 44% of people think the general standard of NHS care has worsened over the past year. And almost half (48%) think it will get worse over the next year.

Some people might argue that polling results of this kind are not worth having - that they are based on people's ill-informed opinions rather than rational and objective analysis of the state of care.

Our view is that public opinion is always worth having. We all use NHS services, and so do our nearest and dearest. We all have a pretty good idea of how good those services are. Top commercial brands know about the value of public opinion - however subjective it may be. They listen very carefully to what people think of their services.

Of course, corporates cross-check customer feedback against rational and objective evidence - for example, sales figures and financial returns. And this is where the NHS comes unstuck.

The Five Year Forward View is to be implemented through 44 Sustainability and Transformation Partnerships. Their published plans all mention improved patient experience. But few, if any, have set baselines for current levels of patient experience, or set targets for how and when patient experience will be improved.

The general public are pessimistic about improvements in care and patient experience. STPs are optimistic. It looks worryingly as though planners and strategists are out of touch with public opinion.

Sustainability and Transformation Partnerships need to put forward measures that show the general public that the promised "radical transformation of patient experience" is on its way. The alternative is to accept that, perhaps, the public may be right.

Patient and public involvement: Breaking organisational boundaries

"People tend not to care about organisational boundaries, but about how services can work better for them and their families." So says Helen Hirst, CEO of a group of Yorkshire CCGs, in NHS England's statutory guidance on public participation in commissioning.

She's right. But the same should apply to health professionals located within NHS organisations.

If we can only see as far as our own organisational boundaries, we'll never understand properly how services can work better for patients and communities. We need to see what has been tried elsewhere, and to learn from other organisations' successes - and failures.

The problem for patient engagement leads is that the learning is hard to track down. There is a wealth of knowledge on patient and public involvement, but it is scattered across hundreds of different websites - from Healthwatch, through various NHS bodies, to national charities and think tanks.

We have brought it all together in the Patient Experience Library because we don't think it's right that while clinicians have access to professional knowledge databases as a matter of course, PPI leads have to resort to Google.

We're delighted that the library is mentioned in NHS England's statutory guidance, and we're talking to the Dept of Health and others about how we can open up the library to NHS trusts and CCGs.

Participation does not come naturally

Participation should be natural, says Rob Webster, Lead CEO for the West Yorks and Harrogate STP. His comment is the opener to NHS England's statutory guidance on patient and public participation in commissioning health and care.

We agree - sort of.

Participation should indeed be a natural part of NHS commissioning. But that doesn't mean that it comes naturally. In fact, it usually comes with lots of toil, sweat, and - sometimes - a few tears.

Patient and public participation is not easy. And that's why this excellent guide from NHS England is so welcome. At 32 pages, it is comprehensive. But it is broken down into clear sections, with lots of hyperlinks to take readers to further guidance and resources if they want.

The sections cover matters such as the policy and strategy context, participation frameworks and principles, and ten "key actions" for CCGs on how to embed involvement in their work.

We were delighted to see the Patient Experience Library mentioned as a useful resource, and there are plenty of other helpful pointers in the guidance as well.

Rob Webster is right - participation in NHS commissioning should be natural. This guide is an important help for people who are trying to make it so.

This is why insight matters

After Mid Staffs and the Francis Inquiry, you might think that lessons had been learned about treating statistics and performance indicators with caution. Francis was clear that "appalling suffering" and avoidable death at the Stafford Hospital occurred because the Board and management of the Trust spent too long looking at figures and not enough time listening to patients.

In spite of that, the view persists among some health professionals that quantitative data is "hard" data, and that patient stories are simply "anecdotal".

It is not unusual for patient voice champions such as Healthwatch to be challenged on the value of their report findings. A common question is about sample size and statistical validity. Sometimes, challenges of this kind are fair. Mostly, they completely miss the point.

This report, from Healthwatch Essex, takes key statements from a group of carers and turns them into poetry. The sample size was small. But the insights are profound.

There is nothing in this report that lends itself to "hard" statistical analysis. But if you want to know what it feels like to have to agonise over putting a loved one into a care home, read this report. It says more about patient and carer experience than a table of numbers ever could.

This is what compassion looks like

Every week, the Patient Experience Library trawls hundreds of websites, searching out new publications to add to the UK's collective evidence on patient experience.

We read thousands of reports every year. Most are good, some are excellent. This one, from Healthwatch Essex, is astonishing.

The work is based on a series of interviews with people who have had to arrange residential care for a loved one.

The interviews were transcribed and thematically analysed so as to draw out poems from people's experiences.

The result is powerful and moving testimony, describing the love, pain, guilt, sadness and loss that people feel when having to "put someone in a home".

There is much talk in health and care services about "person-centred care". Some of it can be convoluted, focusing on definitions and procedures. This report (perhaps we should call it an anthology) shows what caring for someone really means, and takes us deep into the experiences of people trying to do their best for loved ones who are moving beyond their reach.

A wonderful piece of work, displaying an innovative approach, and true compassion.

(Still not) Learning from Mistakes

The Shrewsbury and Telford Hospitals (SaTH) NHS Trust has been in the news recently, following a series of avoidable deaths of babies.

Four years ago, the final report of the Francis Inquiry into the Mid Staffs disaster said this, "The suffering of the patients and those close to them ... requires a fully effective response and not merely expressions of regret, apology and promises of remedial action. They have already been at the receiving end of too many unfulfilled assurances".

Compare that statement with this, from one of the mothers whose baby died in the care of SaTH: "To hear that this (mistake) has happened before - it's just another blow. I've had an apology from the hospital, and assurances that this won't happen again. But other families have had those assurances and those apologies and if those were followed up, in the way that they said that they would, then
I would have my daughter".

It would appear that Sir Robert Francis's warning about "unfulfilled assurances" has not been heeded.

In March 2015, the report of an investigation into avoidable deaths of mothers and babies at the Morecambe Bay NHS Foundation Trust said "It is vital that the lessons, now plain to see, are learnt and acted upon, not least by other Trusts, which must not believe that "it could not happen here". If those lessons are not acted upon, we are destined sooner or later to add again to the roll of names".

In June 2016, the Royal College of Obstetricians and Gynaecologists (RCOG) "Each Baby Counts" report looked at intrapartum and neo-natal deaths. It said "Many national reports have highlighted the fact that the same mistakes are made repeatedly, which suggests that our risk management processes may not be mitigating risk as we hope".

In July 2016, the PHSO's "Learning from Mistakes" report into the death of a three year old child said "local NHS investigation processes were not fit for purpose, they were not sufficiently independent, inquisitive, open or transparent, properly focused on learning, or able to span organisational and hierarchical barriers, and they excluded the family and junior staff in the process".

At Mid Staffs, Morecambe Bay and Shrewsbury and Telford, avoidable deaths occurred for different reasons. But a common thread running all the way through was a failure to hear from patients, and, in some cases, outright denial that patients had valid cause for concern.

A second thread was the failure to learn from mistakes. This includes a failure to treat patient feedback as a fundamental part of risk management. PALS teams and patient experience leads should be seen as an early warning system - the "canary in the coalmine" that can help NHS Trusts to spot that all may not be well on the wards.

We welcome Jeremy Hunt's call for an inquiry into the Shrewsbury and Telford deaths. But we worry that it will simply add to a growing pile of inquiry reports that all draw similar conclusions.

The NHS needs to start learning from its mistakes - particularly in respect of learning to listen to patients. Repeated "unfulfilled assurances" are a disaster, as are repeated "filed and forgotten" inquiry reports.

We have created the Patient Experience Library so that vital learning does not get dissipated and lost. We will be writing - once again - to Jeremy Hunt and Simon Stevens to call for more support for PALS teams and patient experience leads.

Investing in patient experience: House of Lords weighs in

If you only have time to read one report this week - or even this month - read this one.

The House of Lords Select Committee's report on the
Long-term Sustainability of the NHS is a breath of cross-party sanity, recognising issues and concerns that people in the NHS and care services have been talking about for years.

Among many forceful statements, we picked out this one: "We are concerned by the absence of any comprehensive national long-term strategy to secure the appropriately skilled, well-trained and committed workforce that the health and care system will need over the next 10-15 years."

"Workforce development" does not just mean clinicians. Fundamental to a patient-centred NHS are skilled, well-trained and committed patient experience leads. They can spearhead NHS England's goal of care that is "person-centred, coordinated, and tailored to the needs and preferences of the individual, their carer and family".

Last July, the PHSO's "Learning from Mistakes" report called for more support for PALS teams. We have done the same in Patient Experience Library reports including "What Price Patient Voice" and "Flying Blind?"

We are now looking at assembling these, and other evidence sources, to produce an investment case for PALS teams and patient experience leads. We'd like to know what you think. Please get in touch.